Meet Piper! Piper Strong!

My pregnancy was pretty uneventful. No gestational diabetes, no high-risk pregnancy, no complications, just…. uneventful. 

We had just closed on our home and moved to a new town that was roughly an hour away from my doctor and hospital. This truly worried me and gave me such an uneasy feeling.  About half way through my pregnancy, we decided that we wanted to be induced. We had many people ask why we would do such a thing and not let baby girl come when she is ready. I did my research on being induced and there were definitely mixed feelings. We really didn’t have an answer to why, but decided to pursue it knowing deep down that it’s what we wanted.

At 39 weeks and 1 day we headed to the hospital! We were ready to meet our baby girl! About an hour after arriving at the hospital and getting prepped, my doctor came in stating that she had been watching baby’s heart rate and it was higher than she liked. I received something for the pain and the rest is honestly a blur. I was told I was going to need an emergency C-section due to baby’s heart rate and that we were going to meet her sooner than expected! From that point on, all I remember was the shaking, the uncontrollable shaking!  When Piper arrived, she was as perfect as can be! She ended up having a little fever due to an infection but she got over it quickly! And there she was. My perfect baby girl that I had been dreaming about for so long! I was in Heaven, My husband was over the moon, and our family couldn’t have been happier for us!

When we got back to our room, we tried to settle in the best we could. Piper would scream at the top of her lungs out of nowhere for about 30 seconds and then stop. She would scream to the point where she would get beet red every time and this happened over and over. Eventually the nurse took Piper to the nursery and gave us time to rest since we had her so late at night. The next morning, Piper came back into our room and was still screaming every 5 minutes or so. I thought, “Is this really normal for a newborn? It must be. No one else seems concerned.”

When it came time to give Piper her first bath, Piper started screaming like normal but this time instead of turning red, she was blue. Completely blue and she wasn’t breathing. She started seizing and she was rushed to the NICU before we could even understand what was happening.

Our daughter stayed in the NICU for 18 grueling days as doctors worked around the clock to figure out why she had those seizures. Piper had two MRI’s, an EEG, stomach ultrasound, and an echocardiogram. She was hooked up to a feeding tube, IV, and a breathing tube. We were in absolute pain as there was nothing we could do to help. After a lot of testing, the doctors eventually found that Piper had a left sided stroke sometime in utero.

This broke me.

All I felt was guilt. More and more guilt. It took me a long time to deal with this guilt and it truly never goes away… The crazy part is, is that if we did not schedule to be induced that Sunday night, the doctors don’t know if Piper would be with us... God sure works in mysterious ways!  

After 18 days, we were able to take Piper home and begin the journey of PT, OT, Infectious Disease, Ophthalmology, and Neurology appointments. Fast forward Piper is almost 2 and is doing amazing!! She has an outgoing personality, and for sure shows her personality! Piper has officially been diagnosed with spastic hemiplegia secondary to her stroke. She has slight weakness and tight muscle tone on her right side, but so far that’s it! If she has more issues down the road, we will work with it and help her the best we can! She is my biggest hero and she has overcome something I didn’t even know was possible.

Piper is our perfect, spunky little girl and we are so blessed!
​
The Harms Family

Our family’s story with pediatric stroke began on October 20,2017. Makenzie was 5 years old and on her Pre-K field trip to the pumpkin patch with my parents. They were in the middle of the corn maze when she fell. A fall that came from nowhere, and what we would later learn was because she was having a stroke.
 
After this fall, Kenzie wouldn’t calm down and didn’t want to stand up, so my parents took her home.  Kenzie just kept telling them that she didn’t feel good, she was tired and she wanted to lie down.
 
It was about 130pm when I call Shawn from work, he tells me he thinks Kenzie has the flu. I thought that was weird because she wasn’t acting sick that morning. I call mom and she explains in detail about the day.  I ask her to call the consulting nurse and she does. Mom said that the consulting nurse was 85% sure it was nothing, but 15% said to bring her in.
 
At urgent care, the doctor, who had 17 years of pediatric emergency room experience, did all the standard tests, even had her run up and down the hallway, which she did.  The doctor said he couldn’t do a CT scan at that time, but we could take her to Mary bridge if we wanted one and just wait and see what she was like in the morning.  He diagnosed her with a concussion and sent us home.
 
Our house is about 2 miles from the urgent care and once we got home things started to happen quickly.
 
Kenzie tripped on the stair going into the house, she struggled to take her rain boots off, Shawn helped her and sat her in the recliner and she vomited, Shawn, scooped her up and headed to the bathroom, as I started to clean the recliner, he calls for me. I walk in and he says, check this out, he has Kenzie smile and she does, except only the right side of her face was moving, the left side wasn’t moving, and it looked like it was swollen. I looked at Shawn and said, “that isn’t right, we’re taking her in.”
 
We get to Mary bridge, and as we’re going through the triage process, I have Kenzie smile at the nurse, she had a shocked look on her face immediately turns to her computer and starts pounding on her keyboard. As we were admitted, the ER doctor comes in and goes through her vitals and orders a blood draw. We weren’t in the room 10 minutes when the Pediatric Neurologist enters and begins looking at Kenzie and orders a ct scan.  I ask the Dr what she was thinking, and she responds it could be a migraine, epilepsy or a stroke. I turned to my sister and asked did she just say stroke? She responds yes, she said stroke. That’s when I knew.
 
Kenzie went to the CT Scan, then an MRI.  It was 7:30 pm when we were admitted to the PICU.  A few hours later, the MRI doctor would come into our room and tell us, “Your daughters had a stroke, the damage is irreversible and there could be a hole in her heart, any questions?” We were speechless. Right?! I remember looking over at Kenzie and thinking how is this even possible? The next 24 hours went so incredibly fast. More blood draws, an ultrasound of her heart and an EEG.
 
Our friends and family would arrive at the hospital. The staff, parents and students of her dance studio started a go fund me page, even made and sold Makenziestrong T-shirts. Being in the position of having to need that support is overwhelming. Food, gifts, tears, hugs, laughter and most importantly, prayers. We had an emotional support army and they rallied beside us.  
 
Kenzie was a fighter through every second of this. At one point, the nurses said they needed to put a feeding tube in. It was a battle. The nurse would try to put it in, and it coiled. She tried again and it got stuck, they got it in, only for Kenzie to rip it out. At one point, my parents, Shawn and I each held a limb while the nurse attempted to get the feeding tube in.  I was holding her weakened left arm and it was moving.  Kenzie was fighting! and she was fighting with everything she had. 
 
The first of her labs would all come back as negative or normal.  No signs of damage to her heart, no holes and it was functioning normally. Her EEG would show no signs of seizures or abnormalities. We just kept asking ourselves, why would a healthy child have a stroke?
 
Kenzie didn’t move much during those first few days. The team at Mary Bridge was right alongside us, working on speech, physical and occupational therapy. At 5 days into our stay, Kenzie took her first wobbly steps, and it was beautiful. 
 
After our first week at Mary Bridge, we were told that we were being transferred to Seattle Children’s. Upon arrival at Seattle Children’s, we checked in and one of our team nurses met us at the elevator and we walked into our room, there was our team of doctors, therapists and nurses waiting for us. Almost like a surprise party.  
 
It was then that we met Dr. Catherine Amlie-Lafond. She would enter our room with a giant smile on her face and say, “I’m so happy to see you, I’ve been waiting for you since Tuesday.”  As she pulls up a chair, she takes a purple bag off of her shoulder and hands it to me. It was a Warrior bag from Pediatric Stroke Warriors.
 
She says it’s from a wonderful organization that would benefit us. As I quickly look through the bag, there was a little stuffed dog. Kenzie would instantly name this dog, Sarah. Sarah would become very important to Kenzie, like we can’t go anywhere without it, important. 
 
Dr. Lafond was the first person to sit with us and give us a crash course in pediatric stroke. Up until this point, no one had talked to us about pediatric stroke. We only knew that Kenzie had one.   She would also tell us, that in some cases, there is no cause, and from what she had seen, this was going to be the case with Kenzie. She explained that even though the damage after stroke is irreversible, it does not determine the life Kenzie will lead.
 
We would spend about 3 weeks at Seattle Children’s. Kenzie had to re-learn everything, from potty training, how to get on and off the toilet, in and out of the bathtub and car, how to eat, get dressed, brush her teeth, walk, talk and even smile. It was intensive rehabilitation, with her working about 8 hours a day with her therapy team. We would quickly learn that our new normal would come with lots of challenges but even bigger triumphs. The first time her left hand squeezed our finger, the first time she walked with her gait belt, the first set of stairs she climbed, even our day pass out for dinner to Red Robin. By the end of our stay at Seattle Children’s Kenzie was walking. We were discharged with a wheelchair only to return it 2 weeks later.
 
I ordered a Brave Box for Kenzie, and it was my first correspondence directly with Kaysee at Pediatric Stroke Warriors. At the end of her email she said,” Above all, know that you and your family are not alone in this journey and that Kenzie is going to continue to move mountains”.
 
Kenzie did move mountains as she returned to school and dance. Kenzie loves to dance, luckily for us, it’s also a great form of therapy. We would also tackle our “new normal”. Our jobs. Kenzie would start full day Kindergarten, her physical, occupational and speech therapy, Doctors appointments, a few trips to the emergency room, Dance, and because that wasn’t enough, we added Pilates.  I can’t say enough how Pilates has helped Kenzie’s core, her hand grip, strength and flexibility. We can’t thank Ms. Kim enough for not saying no when asked to work 1 on 1 with our daughter. 
 
I’m not certain how any family navigated a journey like this before an organization like Pediatric Stroke Warriors existed, but I know they did. I can’t imagine how alone they must have felt. We are grateful for the ability to connect with other families, whether it’s on social media or at family support days. To be able to see Kenzie in a room full of other kids who are going through the same things as she is, is so important. 
 
Kenzie is a pediatric stroke warrior, she is also a thriving kindergartner, a competitive dancer and has an unquenchable thirst for fun. Her stroke changed a lot of things, but it has made each of us stronger.
The journey has not been easy and we couldn’t have done this without the support of our friends, family, kenzie’s medical and therapy team and Pediatric stroke warriors.
 
#Makenziestrong
 

In the month of September 2017, there were warning signs that countless missed. Dominic was suffering from headaches at school. Our active boy that would do anything to ensure he was playing outside with friends during recess or PE was frequently missing those fun activities. He was in so much pain from headaches that he would spend his time in the nurse’s office at school instead of being a part of the activities he loved so much. When we would find out about it after school, he would usually be feeling better.
 
Dominic’s test scores plummeted after the summer, even with summer tutoring. His processing skills were a struggle. He was crying at the drop of a hat and our patient guy was frequently losing his cool with his siblings and with us. We had many questions: Is he not getting enough sleep? What has his nutrition been looking like? Is school just over his head and too hard for him this year? Does he have a learning disability that is impeding his progress? Is he having friend issues? Is he being hurt by someone? Or is there something going on in his brain that we need scans for?

All of these questions brought us to our pediatrician. Dominic’s regular doctor was retiring, so we saw a new doctor on September 26th. We asked all of these questions at this appointment. His reflexes and vitals were checked and the conclusion was that the headaches must be attributed to the academic struggles he was experiencing and was given a recommendation to get him to bed earlier and to ensure he had well-balanced meals. We left with a prescription to give him Tylenol at school as well as flu shots for all three kids.  We left hopeful that he was alright as the doctor said, but our guts told us there was something more that was going on, we just didn’t know what.

Well, eight hours later, at 1:00 in the morning things began to take a turn for the worse. Dominic came into our bedroom sobbing and inconsolable, which never typically happened with our son. Between crocodile tears he was slurring his words, repeating words and phrases, saying friends’ names and repeating the word homework. As we were trying to make sense of our little guy, with knots in our stomachs and looking at each other with confusion and fear in our eyes, we concluded that he must be experiencing his first night terror. What we didn’t know is that our baby, at that moment, very unbeknownst to us was having his biggest stroke. Not knowing that it was even possible for children to have strokes, we had him sleep with us in our bed. It was a restless night. One with him moaning and kicking until the morning hours.

Like many other parents of children with medical emergencies, the day of September 27th will be one that we will never forget. We got ourselves and our two other kids ready to go to work and school. We allowed Dominic time to sleep in our bed until 7:15, an hour after his natural alarm clock usually has him awake. When trying to wake him up, we discovered that he had lost bladder control...which never happened to him even as a toddler. He wouldn’t open his eyes. He wasn’t able to respond. When trying to get him to walk to take a shower he was slouching and unable to move his right side. With our son’s limp body lying on our bathroom floor and our heart’s aching with fear, we called 911 immediately.

When the medics came in our home to check Dominic out, with our seven-year-old daughter, one-year-old son, and two dogs never leaving Dominic’s side, the medics said his vitals were fine, but that we may want to get him checked out at the hospital. There were questions about a possible allergic reaction to the flu shot. We went to the closest hospital to our home at the Valley Medical ER where he got a CAT Scan and a subsequent MRI hours later. Our extended family was called and stayed in the waiting room...hoping for the best and praying.

Hours later, the ER doctor on staff came into our dark room when all the while Dominic was still unable to talk, move his body or open his eyes. While we were holding Dominic’s hands, the doctor’s words are fused in our memories. He said: “I am so sorry. The MRI shows that Dominic has suffered multiple strokes. He has most likely been suffering these strokes over a couple of week timespan.” With knees weak, hearts pounding and consequently feeling very queasy, our response was: “Strokes? What does that even mean? He’s going to get better, right?!” To which he responded: “This is most likely as good as it’s going to get.” Once that doctor left and we were left alone with our son who we were hopeful was still taking things in, yet at the same time very fearful that he heard that he was not going to get better and fearing he would believe that, we leaned over him... praying... letting him know that we loved him, we knew he was strong; that he can fight this; that he will get better; and that we believed in him.

We were then transferred to where we would soon consider our home away from home, filled with the folks that we credit for saving our son’s life: Seattle Children’s Hospital. We were assured that if we were going to be anywhere and under anyone’s care, then this is the place to be. This is where we learn that our amazing doctor, Dr. Amlie-Lefond, a national leader in pediatric stroke specialty, comes in. She had already been in contact with the Valley ER and had been guiding Dominic’s care before we had even left.

Upon arrival to the Children’s PICU our angel nurses were not only caring for our son, but they were also caring for us. With the words that the ER doctor said still ringing in our ears, our nurse Cara ensured that this was the place to be and that they were going to take the absolute best care of our son. She also stressed that if we were going to be anywhere in the nation, she believed this was the absolute best place and our son was under the absolute best care by Dr. Lefond and the amazing team of neurologists and other staff.

The night of September 27th into the wee morning of September 28th was filled with fear, tears, panic, exhaustion, hope and faith… along with amazing nurses, brilliant doctors, social workers, tests and machines.  There were countless tests that were performed on Dominic until 3:00 in the morning.  Some of them included an MRA to check his arteries, an EEG to test to check for seizure activity, he was also receiving frequent neural checks and labs. He even had to have a lumbar puncture in his spine to rule out meningitis which also turned out to be clear.

The question still remained: What was causing our seemingly healthy child to have multiple strokes at the age of 9? To further assess the situation, an angiogram was completed several hours later to get a closer look at his vessels into his brain.

The results to the angiogram, the MRI, MRA, and tons of other assessments, allowed our neurology team to deduce that he had what they call a dissection of his left vertebral artery which then caused a larger clot to form in the basilar artery. As the body tried to break down the clot, parts of the clot would break off and cause strokes in three different parts of his brain, making a total of seven individual strokes. Although we have learned from Dr. Lefond that it is very difficult, if not impossible, to date a stroke, based on Dominic’s mood changes, headaches and processing changes, he most likely was suffering from these strokes for the past couple of weeks, until the largest of the strokes sent us to the hospital.

We also learned that Dominic was born with posterior communicating arteries which quite literally saved his life. Only 30% of the population has this which allows more collateral blood flow to the brain. Because he has these it allowed enough blood flow to the damaged area in order to not be catastrophic with irreversible damage. If he was not part of this 30% doctors have feared that he would no longer be with us. The strokes would have taken his life. What is further fortunate about our situation is Dominic's age and neurological plasticity. His brain can recover over time, reroute and create new paths and we are hopeful and expectant for almost a full recovery.  And while the journey is long, we are along for the ride and supporting our guy every step of the way.

We were in the hospital for 31 days. Every day was filled with doctors, nurses, therapists, social workers, Child Life staff and other amazing hospital staff members. Our family, church and close friends also never wavered. We had countless visitors, gifts, prayers from people around the world, and notes of encouragement from students at school, members of our church, as well as many supporters of our family who we didn’t know would soon become part of our circle.
 
That’s when Kaysee with the Pediatric Stroke Warriors came into our lives. The Pediatric Stroke Warriors changed our story.  They helped us see that we were not alone.  Our eyes were opened to a whole community that we didn’t even know existed.  She is a big reason why we will continue sharing our story and advocating for all children and families living through pediatric stroke. Kaysee also sent Dominic a Brave Box filled with gifts that met his interests and needs which also let him know that he was not alone and that there was a whole group dedicated to kids just like him.  He felt so much joy and empowerment after opening this special box. We were also gifted through the Warrior fund with gas cards and gift cards for groceries too…which is a big relief for a family whose lives have just been turned upside down.
 
After leaving the hospital with our son in a wheelchair who was just starting to use a crutch, who was struggling with managing his emotions, who was overwhelmed by the cognitive demand of daily life, we dedicated our time to reacclimating our children with life all together once again at home. Over the past six months since then we have spent hundreds of hours in the car going back and forth to therapies at the Seattle Children’s South Clinic (thank goodness for great Harry Potter audio books!), we have gotten back into a full-time school schedule, we have taken many steps forward and also lost momentum, all the while we have thanked God for every moment of every day.
 
Dominic’s life is back to normal in so many ways but each day we are adjusting to a “new normal” way of living.  Dominic will never be able to try out for the school football team, he will never be able to wrestle, or participate with his friends in a neighborhood boxing match.  Try telling a 10-year-old he can never jump on a trampoline, go in a bouncy house or ride a roller coaster ever again for risk of damaging his arteries and having more strokes.  Many of his young dreams are shattered because of this. But one thing we keep going back to and one he can keep depending on his is his flexibility and resiliency.  Just like the neuroplasticity his brain is going through, Dominic is creating new pathways in life to do the things he loves but in different ways.  

Throughout this journey we have learned a lot about love, about who we are and about how we want to live our lives. Some of our story might sound tragic, but we choose to look at it as a blessing. We have learned many things on this journey and continue to as our son continues to grow, develop and heal, such as:

- We learned that God has a plan and to trust full-heartedly in His plan;
- How to truly live in the moment;
- How to rely on others;
- How to encourage others and how to receive encouragement;
- That the therapy pool is seriously so warm;
- That the hospital pizza is seriously delicious;
- That everyone we worked with at Seattle Children’s and Pediatric Stroke Warriors are true saints on Earth;
- That we have the most incredible support team
- That life is just one big roller coaster ride… just hang on tight, lean in the turns, go with the flow, live in the moment and love the ones you’re with;
-  We learned that generosity of spirit and the willingness to share our own ‘gifts’ freely with others is such a blessing;
- We learned that Dominic’s strokes have changed us all. That we will never be the same.  We are closer, we are braver, we are stronger, we are mightier and we love each other fiercer than we ever have before;

We were given a valuable lesson from a volunteer at the hospital from when her son was at Children’s years ago:  That even though we generally look at ourselves as “givers” and that it is hard and awkward to receive charity from others; she said that without receivers in the world, there would never be givers.  We will all be in the receiver role at different times in our lives, and it is our job as receivers to allow the givers to do what fills their hearts – to give.  We are walking examples of being at the hands of the kindness and generosity of our friends, our family, of Seattle Children’s Hospital and the Pediatric Stroke Warriors…Our hearts are full…and we hope yours are too.
 
 

Fear.

Every day we live with the fear that we got too lucky. That the scariest parts of being the parents of a stroke survivor aren't really over. Sometimes I just stare at him until he gets a shy smile and asks me "what!" as only a six year old can.

When Brayden was 2 years old, he had a stroke in the lower right part of his tiny brain. I was a day behind my wife and Brayden on a visit to my in laws. I received a phone call that Brayden was having a hard time grabbing stuff with his left hand and he was drooling a bit.

I knew it was nothing. I was the tough parent. Hadn't been to the doctor in years, and had to be missing a limb to get me to make an appointment.

We all discussed it and waited until the next day to take him in. Fear had begun to creep in on the edges of my conscious thoughts when my brother in law who is a firefighter said it sounded like the tell tale signs of a stroke.

We took him to the local emergency room that day, and were slightly relieved when we were told with confidence by the doctor that kids don't have strokes, and he probably hurt his hand. Give it a day or two on some amoxicillin for his sinus infection (must be causing the drooling) then take him in again if it doesn't get better.

We went home that night, and we knew something was wrong. My wife took him to the local Children's Hospital as she got home first. I sat in my living room waiting for word on the CT scan they were running.
​
I will never forget that night for the rest of my life. My wife called me, hysteria barely contained as she told me with a shaky voice that they saw something on the CT, and were transferring him to Seattle Children's Hospital. My best friend was there at the house with me helping me keep my mind right while I waited for word. He also gave me a hug while I cried uncontrollably for five solid minutes. My mind was working overdrive and a new thought found purchase and wouldn't let go.
My son's life was in real danger.

I jumped in my truck and raced to the Hospital where they were doing an MRI to find out more. His iron was dangerously low.

My baby boy was sick. Really sick.
​
​The MRI results came back and the doctors sat us down and gave us the news.

We were there for nearly a week meeting with some of the best doctors I've ever met. We would meet with a team of seven (SEVEN!) Neurologists while they broke down everything for us. He was diagnosed with Factor 2 Prothrombin genetic mutation. Which it turns out came from me.
​
He was so small, and so fragile. I held him time and time again as we drew blood, inserted a catheter as he hadn't urinated since he'd been under. My wife and I took strength in each other, and felt helpless as our small boy lay sleeping in her arms.

Dr. Amlie-Lefond with the Seattle Children's Stroke Program, gave us the outlook that she expected a near full recovery of all functions, and from the tests they'd run at the hospital didn't see any immediate neurological limitations, but we would need to continue to monitor him.

So here we sit, nearly four years later. Fear lives permanently within me, though it's boxed neatly in a corner. A shadow in a well lit room. But the only reason I'm able to contain that fear is because of the strength Brayden has shown.

He's had to take Iron daily for four years, along with multiple blood draws, physical therapy, speech therapy, a few check up MRI's, and a dietary plan as we continue to try and chase down his anemia issues.

Despite that, Brayden has done nothing but excelled at sports, shown above average aptitude for academics, and inherited an exceptional sense of humor and empathy from his mom. He doesn't realize the extent with which life has thrown him a curve. That strength can't be taught, only earned.

His strength has been forged through trials he's experienced that many adults would fold under. His fire red hair a testament to his will. He's the reason the fear stays at bay. He is my first born son. My light.

He is my Warrior.
​
​~Travis Greenwood AKA "Dad"

​Like most of you, my husband Nick and I were not aware that a stroke could happen in a child, must less an infant, until it happened to our son Jackson.  By all accounts, he was perfect when he made his way into the world in 2012.  He had all his fingers and toes and even received high Apgar scores. Although exhausting, our stay in the hospital was uneventful; however six hours after bringing him home he awoke screaming and inconsolable. After some time, he quieted down but appeared to stare off in a daze, something even us first time parents found unusual. For an hour he continued to stare and refused to eat and Nick and I just knew we had to return to the hospital.

It took over an hour of waiting in an ER room to finally be seen by a nurse who began to take his vitals. When Jackson’s glucose levels read less than 20, the batteries in the device were changed given the low number and his level was taken again, still with no change. We were asked to try to feed him while we waited for the on-call pediatrician to arrive. We would later find out that this is when the ER contacted the Pediatric ICU to ready a bed but it would be 8 more hours until we made it to that floor.

Since Jackson refused to eat, we were admitted to the pediatric floor where a head IV and an NG tube were placed in an effort to keep him hydrated and raise his blood sugar. Eventually we were brought to our own room where they could monitor Jackson. For the next 8 hours, he seemed to do well but any sense of relief I had gained over than time vanished when I looked over at him in the crib and he was blue. Immediately the monitors began to alarm and Nick ran out into the hallway to find a nurse while I contemplated giving him CPR, as I was unable to figure out how to use Oxygen device. A nurse ran in and provided him with assistance, returning his oxygen levels to 100% but not 5 minutes later it dropped back down to 60 and again Nick was out in the hallway looking for help. And from that point on, we watched his monitors for any indication of distress.

Sometime later, another nurse took over Jackson’s care and while taking vitals, she watched Jackson turn his head and eyes to the left, followed by twitching of his left arm; unmistakable signs of a seizure. While she discussed what had just occurred with the doctor, Nick announced it was time to take us up to the ICU because Jackson absolutely needed more intervention than he was receiving.

 As we walked from one floor to the other, Jackson continued to have seizures, which began to present in his entire body. The PICU became a dramatic scene from every Medical Drama series you’ve seen on TV, with doctors and nurses coming in and out, directing others on what drugs should be administered and questioning Nick and me about our family history.  After administering a 3rd dose of a powerful anti-seizure medication we were told he would need to be intubated for his safety as the medication could put him into a sleep in which he’d never awake. We were required to leave the PICU and for 7 long hours I ran over every possible event in my pregnancy that could account for what was happening to our child. Was it because I ran while I was pregnant, or took the wrong prenatal vitamins?  Was this something I did?

It would be 3 more days until we finally received a diagnosis of stroke. But during that time Jackson was hooked up to an EEG monitor, received heavy doses of anti seizure medication, had an elevated heart rate near 200, a CT Scan, an MRI, an EKG, was evaluated by hematology, endocrinology, urology, ophthalmology, cardiology, neurology, and almost lost his right foot when efforts to perform a true blood pressure went wrong.

Nothing prepares you for bad news, not even after watching your child hooked up to monitors and ventilators for days. When his neurologist presented the stroke diagnosis, it was as if the air was knocked right out of my lungs. I watched her describe the MRI and all the damage that had occurred, even in the fibers connecting the left and right hemispheres of his brain. And all I wanted to know in that moment was if he was going to survive and if he did, would he require 24 hour assistances for the rest of his life; questions that his doctor was unable to answer.

We sat there that day emotional wrecks, asking our friends and love ones to give us time to process this information; speaking with the Chaplin; and feverously searching the Internet for any information we could about pediatric stroke, which in 2012 was almost nothing. In fact, most of the information related entirely to adults, who have much worse outcomes. You can imagine the relief we began to feel when the following day he started to show improvements; initiating breaths on his own, responding to neuro exams and lowering his heart rate.  And because we had studied and paid attention, we understood the monitors and their alarms and were able to participate in his care, standing in for rounds and essentially being able to identify the relief in the nurses and doctors that he was in fact improving. After our first week in the hospital, he was ready for the intubation tube to be removed and Nick and I were finally able to hold Jackson for the first time since the pediatric floor. And after another week in the PICU, we were moved to the pediatric floor where he had to learn how to eat again and be able to maintain a consistent glucose levels over a period of time. Then one day two weeks later, he was ready to go home.

Jackson suffered a stroke in his right occipital lobe. He has speech, fine and gross motor delays, as well as issues in his peripheral vision but every day he accomplishes a new word or action and we are so incredibly proud of him. Next year he will enter into a typical kindergarten class with the help of an aid, which is a tremendous milestone for a kid whose life was so uncertain on his 3rd day of life.
​
Even as first time parents, we knew something was off with our child due to the far off staring that occurred when we brought him home. We were exhausted but our gut said, “go back”.  In hindsight, the staring off, the apnea, the low glucose and seizures were all glaring signs of pediatric stroke. We caught the first sign early on but since many medical providers believe pediatric stroke to be rare, stroke was not the first thing they thought of when Jackson arrived. 

As parents of a stroke survivor I know this journey and I am vigilant on educating each of his doctors and nurses regarding the signs and symptoms of pediatric stroke, because it matters. I hand out brochures, Pediatric F.A.S.T cards and I ask them all to participate in Pediatric Stroke Awareness in May by creating a Stroke Awareness Board in their offices for their patients and staff. I am proud of Jackson - he is mighty, and I am grateful we caught the signs so early, but I believe we can continue to do better. We can help change the response time in a diagnosis for another child by keeping the momentum of pediatric stroke awareness growing. 

​Alisa Sullivan- Mom to Jackson and PSW Board Member

I have no doubt, your inboxes, screens, social media feeds, and even real-life conversations, have been inundated with talk about COVID-19. This is an unsettling time for everyone with the uncertainty and unfolding conditions in our state and across the globe right now. Our hearts and thoughts are with all of our families, supporters and their loved ones during this everchanging time.
For our warrior community, where children and families often spend much time in clinics and hospitals, and may have lowered immunity, we want to be sure and share yesterday’s published joint statement from our community partners with the Child Neurology Foundation and Child Neurology Society.

To our nurses, physicians, therapists, first responders and all other healthcare professionals reading this – we see you – and we THANK YOU for your hard work each and every day, and even more so during this time in supporting our community’s health.
 
PSW has had to shift some of our programs internally as a result of COVID-19. Following the guidance from the CDC and Public-Health - Seattle & King County, we are pausing temporarily in bringing together any of our volunteers for building and distributing Warrior Bags and Brave Boxes to children and their families at this time. We hope to resume this soon enough, but in the meantime, our appreciation to the many hospital partnerships that we cultivated over the years that have our supportive resources on hand for newly diagnosed families during this time.
 
We have cancelled our March Seattle Aquarium day and our April 24th-26th Pediatric Stroke and Brain Injury family camp weekend in partnership with Camp Korey. While we will be unable to reschedule a camp like this for 2020, we will continue to create future opportunities and events to bring together our local children and families in support when it becomes feasible.

PSW and our programs are what they are today because of the generosity of our supporters, donors and Corporate Sponsors. Although our volunteers have put much heart and many hours into planning and preparation for our 5th Annual Wishes for Warriors Auction Gala, protecting our participants and community comes first. Life is drastically different than it was two weeks ago and may continue to be so in the weeks to come. We are continuing to monitor local health authority recommendations in King County and have begun preparation for if we need to postpone our event to a fall date. We have always been truly humbled by the enormous support in making a difference for pediatric stroke and we will continue to communicate further about our Wishes Event with our sponsors, donors and attendees in the days to come.
 
Above all else, we are thinking of each of you and especially our tiniest but mightiest of warriors right now. By staying strong and supporting each other as a community, we will find our way through it, and we will emerge different but stronger, together.

Kaysee Hyatt
​
Founder & Executive Director 
[email protected]

The month of May has long been recognized as Stroke Awareness Month. I want to ask you to stretch your beliefs about what you already know about stroke and to understand it impacts children of all ages as well. I want to encourage you to know the signs and know that a rapid response is just as important in a child, as it is in an adult.

At the very heart of our mission with Pediatric Stroke Warriors, is children. We believe that increasing awareness leads to a quicker recognition of stroke in a child, and that having a foundation in support can help a child flourish to their greatest potential after stroke. We place importance on both awareness and hope for Pediatric Stroke.

I know that quite possibly, the last time you heard a stroke story, it didn’t involve a healthy-seeming newborn or a fifth-grader who went to the nurse’s office with dizziness and a headache. It most often wasn’t of a teenager who spent a “normal” day at school, only later in the evening to experience numbness down one side of their body. When you’ve never heard about stroke in children, it becomes easy to assume it must be very rare. Yet stories like these are real and are shared every day.

For over the last 4 years, Pediatric Stroke Warriors has continued to strengthen communities by providing support to families and promoting advocacy, public awareness and education of current resources related to stroke in children.  Although awareness and education continues to overall increase, the most common misconception about stroke that many organizations encounter regularly , is that it only impacts older people.

Consider these facts:

• Stroke occurs at the highest rate in infants younger than 1 month of age, effecting 1-2000 births each year and nearly 5 per 100,000 children through ages 1 month to 18.
• Stroke is as common as brain tumors in the pediatric population.
• Stroke is one of the top ten causes of death for children.
• Studies have found that in the US, it can often take longer than 24 hours to diagnose stroke in children. Which is valuable time missed when every minute matters. Quick, proper treatment is critical to saving a child’s life and minimizing brain damage and lasting effects.

Six years ago, I became that parent, we were given that medical diagnosis, perinatal ischemic stroke. We were shocked. The memories and emotions that came with it can still feel staggering to me at times. I assure you this is not just a moment our family faced; it’s a reality for countless families. For children of all ages.

Even though stroke is relatively common in children, scores of medical professionals have never treated a child who has had a stroke or received the education needed to diagnose it. It took over six months for my daughter to be diagnosed with the stroke she had been born with and further time to build the right medical team for her ongoing care. As parents, it took us even longer to find the right family support and to learn we were not alone.

When I think of all of this, and the fact there are so many other families with these same stories, whether from birth or with an older child, it leaves me with so many wishes for our children. I wish everyone knew about pediatric stroke and the reality for so many kids. Some days I underplay what it’s like, this journey with a child and stroke. Sometimes I guard my words and worry I will make someone uncomfortable with the facts about pediatric stroke. But maybe, just maybe, we need to make ripples in the water for change. I want the words to sink in, to mean something to you. To spark a desire to bring the needed visibility to awareness, to give our children’s generation and parents a voice.

A Brain injury like stroke, can’t be seen on the outside. You can’t see the void, the permanent damage on the right side of my daughter’s brain from her stroke at birth. With a simple glance, you may not even notice that her left side is weak, that she can’t use both her hands equally or that her left heel never strikes the ground when she walks. Her little brain and body goes through tremendous work to process stimuli in the everyday world. And she’s not alone.

The Warriors: Of children surviving stroke, roughly 60%  will have permanent neurological disabilities, most commonly hemiparesis or hemiplegia, a form of cerebral palsy. Beyond the initial stroke, there is the added risk of re-occurrence, the possibility of seizures and other long-term disabilities. Therapy and rehabilitation become a regular part of daily life throughout childhood. Children forgo tests, surgeries, therapy and medication one day at a time. Caregivers will often get the bulk of the credit, praise for doing exactly what anyone would do out of love, but I believe the children are the warriors.

Be the change: A stroke can happen at any age. Yet with the limited information and resources out there about it, stroke is often the last thing thought about among many medical professionals or families when it comes to a child. Many well-meaning attempts with articles trying to bring awareness are overshadowed by calling stroke in children “rare.” Know this, a stroke is a medical emergency at any age, and the sheer chance that it can happen to your child demands attention to the signs of pediatric stroke.

The harshest reality is that stroke in children is among the top 10 causes of death. It has to matter. It has to matter to medical professionals so they can learn how to recognize it and how to treat it in a timely manner. It has to matter to anyone that has a child or works with children because if those signs of stroke are ever present, every. second. counts.

My hope, a hope shared by all of us with Pediatric Stroke Warriors and the children and families we serve, is that you will join us in amplifying the awareness this May and be a voice for children. Cause a ripple effect in the knowledge that strokes in children of all ages are indeed real and how important it is to recognize the signs rapidly. If it makes a difference in one child’s life, then you can bet the awareness you shared is worth its weight in gold.

Kaysee Hyatt
Co Founder & Executive Director of Pediatric Stroke Warriors


Want to share in the awareness? Download our Talking about the Facts:  Stroke in Children toolkit

As the holiday shopping season is in full effect, we share these online toy stores to help parents, friends or family members shop with a little more ease for a child this year. Shopping for toys that encourage play for children with physical, cognitive or developmental disabilities was once a very difficult task. Not to mention the costs of purchasing a toy that was specific to "special needs" was often a steep price to pay. However, each year more and more companies are looking to create toys that help kids flourish in all areas. 

With the ease of online shopping anyone can purchase toys that are suitable for a child’s particular abilities. Whether looking for toys specific to two handed development, speech, sensory integration, fine or gross motor skills- there are many online stores that specialize in or have special sections geared for educational and developmental growth. 

​Amazon.com With the wide reach of Amazon, they can show you many options very quickly and usually fairly reasonable prices. Amazon even has a “Special Needs Toys Section” that offers everything from Action Figures to Tricycles.

​Beyond Play  offers the most extensive selection of products for young children of all abilities - from infants and toddlers to children in the early elementary grades. They carry a wide selection of fun and educational products in all areas of child development, as well as specialized products for early intervention and special needs.

ChildTherapyToys.com ChildTherapyToys.com was founded by child psychologists to provide therapy products to mental health professionals who work with children. These toys and activities have been specially selected and tested. They are great for developing skills which makes them perfect for special needs children who often need just a little extra help.

Different Roads to Learning Different Roads to Learning specializes in supporting, educating and inspiring all people affected by Autism or Sensory Spectrum Disorder. Different Roads offers more than 600 tools and resources to help individuals succeed both academically and socially.

Discovery Channel Store The Discovery Channel store focuses on offering the most informative, engaging, and entertaining products available. As an extension to the television network, the store provides educational and fun (mostly science related) activities, games, and toys.

eSpecial Needs From oversized building blocks and bungee jumpers to snapwall playsets and sand and water activity tables, eSpecial Needs offers a variety of engaging active play toys for children.
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​Fat Brain Toys Fat Brain Toys is a retailer and developer of unique specialty toys, games, and gifts they’ve carefully chosen from around the world. They stock over 6,000 high-quality products, most shipped the same day, including: Erector Sets, Science Projects, Games, Puzzles, Educational and more.

FunAndFunction.com The FunAndFunction.com husband and wife duo decided to design and develop their own line of sensory disorder products to build skills and self-esteem in every child. Their products are fun for all children, but especially helpful for children with SPD.

Growing Tree Toys is a specialty toy store committed to providing educational toys that challenge, stimulate, and encourage children to express their creativity.​

Lakeshore Learning is dedicated to creating innovative educational materials that spark young imaginations, instill a sense of wonder and foster a lifelong love of learning. Although not specifically targeted towards children with special needs, a number of their products can be very useful for children with special needs.​

Marbles, The Brain Store Marbles started with the simple idea of finding the best brain games out there and putting them all in one place. Products for anyone who want to improve focus and attention, enhance creativity, become better multi-taskers and get the most out of the smartest supercomputer out there: the brain.

MelissaAndDoug.com For over 25 years the Melissa and Doug brand has created award winning toys, games, and more with an emphasis on value, quality, and design. The simplicity of their designs make many of their products very helpful in developing motor skills, cognitive skills and spatial skills.

Vtechkids.com VTech Electronics is a world leader of age-appropriate learning products. Since 1980, VTech has been developing high-quality, innovative educational products that enrich children’s development through fun and smart play. VTech offers many digital products that Special Needs children are able to understand and use

Want to know more about a product before you buy?
​​
​AblePlayTM is a toy rating system and website that provides comprehensive information on toys and play products for children of all abilities. AblePlay was created so parents, friends, family members, educators, therapists and others can make the best decisions when purchasing products for children in their lives, especially children with special needs.

​Check out their AblePlay Toy guide for top rated and suggested ideas in play.

​Do you know of another resource not listed that has been helpful for you and your child? We want to hear it, please reach out to us and share or post in the comments!

There is an every day challenge that many parents have faced in the love/hate relationship when their child begins wearing an orthotic. As parents we absolutely love that this device is giving our child the support they may need - but, the challenge in finding the right shoe for both comfort and style can bring out the worst hair pulling shopping experience for even the strongest of parents. 

A question that we receive often is that my child just got their first orthotic, "what now?" Families have all shared both the struggles and the success in supporting a child in wearing a daily orthotic and finding the appropriate footwear. We want to make it easier for the next parent by sharing best suggestions in the world of AFO support.

INTRODUCTION TO BRACING & ORTHOTICS ​

It’s natural for parents to question the need for bracing and the benefits it will serve. As you learn more about orthotics and their potential role in the life of your child, you will come to know that orthotics can be a valuable resource for improving overall physical health and emotional well-being.

​The Benefits of an Orthotic

Ankle Foot Orthotics (AFO’S) are commonly prescribed in children with neurological disorders such as stroke and Cerebral Palsy. Simply put, an AFO (sometimes called a brace or splint) provides support to help a child maintain a foot/ankle position, encourage mobility and overall improve stability and success.

Helping your child adjust emotionally 

Even when an orthotic is properly fitted, in a fun design or your child's choice - your child may still experience frustration in wearing one. Most often the orthotic is to be worn continually, day and/or night, so it's not surprising that there is an adjustment period both physically and emotionally for both child and parent. 

To help a child adjust:
​

• Be positive and explain how much the orthotic helps. Encourage your child to think of it as a something that makes them stronger, faster and safer. 
• Talk with and prepare your child with answers for when others may ask about their orthotic.
• Be understanding that they may be somewhat apprehensive. Children don’t want to stand out from their peers, so it can be difficult to wear an orthotic because it is noticeable to others.
• Share pictures and stories of other children or adults, that also wear orthotics.

The struggle is most often real in finding the perfect shoe for your child to wear over their orthotic. Shoes that fit orthotics are always challenging to figure out and find. Often times children may need 2 different sized shoes or a wider shoe.  Some may only need to wear an orthotic on one foot, thus making a difference in shoe sizes and an increased challenge in purchasing shoes. 

We encourage you to work closely with your child’s orthotist, physical or occupational therapist, to always ensure proper fit of orthotic and shoe.
​
With so many factors to consider we have shared the following recommended brands by parents:

• Nordstrom (retail locations will sell separate sizes in same shoe)

Specialty Footwear:

• Keeping Pace
• EasyUp Shoes
• Hatchbacks Footwear
• Plae – with XL Tabs
• Nike Flyease
• BILLY Footwear 

Shoes that provide a wider toe box when removing shoe insert:

• New Balance 
• Converse
• Stride Rite – Wide

Winter Footwear:

• Butler Brand
• ​Mya Mayu (Wanderer Boot)

​

Socks play an important role in keeping the skin protected from an AFO. Purchasing breathable, seamless, cotton socks are best. Knee high socks work better for higher orthotics and can be purchased at most stores.
​
Your child's orthotist may often include AFO-specific socks that can be purchased at specialty stores like those listed below:

Questions will always come up, and finding that supportive community to ask those questions outside of your child's medical team - is important. Some of the very best "hacks" have come from other parents. The following are supportive social media pages specifically for families to connect and learn more.

KISS Pediatric Stroke Support (private facebook page specific to impacted families)
CHASA Shoe Exchange program 
Parents of Kids with AFO, SMO & KAFO 
AFOwear
Ability Hacker
PLAE with Orthotics - (page is hosted by PLAE company)
​Inspired by Pediatrics Community

Like most of you, my husband Nick and I were not aware that a stroke could happen in a child, must less an infant, until it happened to our son Jackson.  By all accounts, he was perfect when he made his way into the world in 2012.  He had all his fingers and toes and even received high Apgar scores. Although exhausting, our stay in the hospital was uneventful; however six hours after bringing him home he awoke screaming and inconsolable. After some time, he quieted down but appeared to stare off in a daze, something even us first time parents found unusual. For an hour he continued to stare and refused to eat and Nick and I just knew we had to return to the hospital.

It took over an hour of waiting in an ER room to finally be seen by a nurse who began to take his vitals. When Jackson’s glucose levels read less than 20, the batteries in the device were changed given the low number and his level was taken again, still with no change. We were asked to try to feed him while we waited for the on-call pediatrician to arrive. We would later find out that this is when the ER contacted the Pediatric ICU to ready a bed but it would be 8 more hours until we made it to that floor.

Since Jackson refused to eat, we were admitted to the pediatric floor where a head IV and an NG tube were placed in an effort to keep him hydrated and raise his blood sugar. Eventually we were brought to our own room where they could monitor Jackson. For the next 8 hours, he seemed to do well but any sense of relief I had gained over than time vanished when I looked over at him in the crib and he was blue. Immediately the monitors began to alarm and Nick ran out into the hallway to find a nurse while I contemplated giving him CPR, as I was unable to figure out how to use Oxygen device. A nurse ran in and provided him with assistance, returning his oxygen levels to 100% but not 5 minutes later it dropped back down to 60 and again Nick was out in the hallway looking for help. And from that point on, we watched his monitors for any indication of distress.

Sometime later, another nurse took over Jackson’s care and while taking vitals, she watched Jackson turn his head and eyes to the left, followed by twitching of his left arm; unmistakable signs of a seizure. While she discussed what had just occurred with the doctor, Nick announced it was time to take us up to the ICU because Jackson absolutely needed more intervention than he was receiving.

 As we walked from one floor to the other, Jackson continued to have seizures, which began to present in his entire body. The PICU became a dramatic scene from every Medical Drama series you’ve seen on TV, with doctors and nurses coming in and out, directing others on what drugs should be administered and questioning Nick and me about our family history.  After administering a 3rd dose of a powerful anti-seizure medication we were told he would need to be intubated for his safety as the medication could put him into a sleep in which he’d never awake. We were required to leave the PICU and for 7 long hours I ran over every possible event in my pregnancy that could account for what was happening to our child. Was it because I ran while I was pregnant, or took the wrong prenatal vitamins?  Was this something I did?

It would be 3 more days until we finally received a diagnosis of stroke. But during that time Jackson was hooked up to an EEG monitor, received heavy doses of anti seizure medication, had an elevated heart rate near 200, a CT Scan, an MRI, an EKG, was evaluated by hematology, endocrinology, urology, ophthalmology, cardiology, neurology, and almost lost his right foot when efforts to perform a true blood pressure went wrong.

Nothing prepares you for bad news, not even after watching your child hooked up to monitors and ventilators for days. When his neurologist presented the stroke diagnosis, it was as if the air was knocked right out of my lungs. I watched her describe the MRI and all the damage that had occurred, even in the fibers connecting the left and right hemispheres of his brain. And all I wanted to know in that moment was if he was going to survive and if he did, would he require 24 hour assistances for the rest of his life; questions that his doctor was unable to answer.

We sat there that day emotional wrecks, asking our friends and love ones to give us time to process this information; speaking with the Chaplin; and feverously searching the Internet for any information we could about pediatric stroke, which in 2012 was almost nothing. In fact, most of the information related entirely to adults, who have much worse outcomes. You can imagine the relief we began to feel when the following day he started to show improvements; initiating breaths on his own, responding to neuro exams and lowering his heart rate.  And because we had studied and paid attention, we understood the monitors and their alarms and were able to participate in his care, standing in for rounds and essentially being able to identify the relief in the nurses and doctors that he was in fact improving. After our first week in the hospital, he was ready for the intubation tube to be removed and Nick and I were finally able to hold Jackson for the first time since the pediatric floor. And after another week in the PICU, we were moved to the pediatric floor where he had to learn how to eat again and be able to maintain a consistent glucose levels over a period of time. Then one day two weeks later, he was ready to go home.

Jackson suffered a stroke in his right occipital lobe. He has speech, fine and gross motor delays, as well as issues in his peripheral vision but every day he accomplishes a new word or action and we are so incredibly proud of him. Next year he will enter into a typical kindergarten class with the help of an aid, which is a tremendous milestone for a kid whose life was so uncertain on his 3rd day of life.
​
Even as first time parents, we knew something was off with our child due to the far off staring that occurred when we brought him home. We were exhausted but our gut said, “go back”.  In hindsight, the staring off, the apnea, the low glucose and seizures were all glaring signs of pediatric stroke. We caught the first sign early on but since many medical providers believe pediatric stroke to be rare, stroke was not the first thing they thought of when Jackson arrived. 

As parents of a stroke survivor I know this journey and I am vigilant on educating each of his doctors and nurses regarding the signs and symptoms of pediatric stroke, because it matters. I hand out brochures, Pediatric F.A.S.T cards and I ask them all to participate in Pediatric Stroke Awareness in May by creating a Stroke Awareness Board in their offices for their patients and staff. I am proud of Jackson - he is mighty, and I am grateful we caught the signs so early, but I believe we can continue to do better. We can help change the response time in a diagnosis for another child by keeping the momentum of pediatric stroke awareness growing. 

​Alisa Sullivan- Mom to Jackson and PSW Board Member
​

We want take a moment in appreciation to highlight a story that most would not otherwise be aware of. This past Wednesday, March 14th, House Bill 668 was presented to the House of Delegates in the state of Maryland by a panel which included families, children and experts in the medical field, all in an effort to do more for increasing the awareness of pediatric stroke.
​
This proposed legislation is not only important, but groundbreaking for pediatric stroke. Going well beyond declaring May as Pediatric Stroke Awareness month, this proposal would require that the State Department of Education and Maryland Department of Health, provide awareness and training among directors of student services, school nurses and licensed childcare providers on the need for a prompt recognition of stroke in a child.

Awareness leads to a quicker response and lifesaving outcomes for children
​
The symptoms of stroke can sometimes be subtle or mimic other more common conditions such as heat stroke, migraines or viral illness. Emergency treatment is often delayed due to an initial misdiagnosis of stroke. This can lead to devastating consequences for a child. Because there are often long delays in diagnosing stroke in children, studies have often shown that the average time to diagnosis exceeds 24 hours. That’s too long.

​The State of Maryland has one of 10 active pediatric stroke treatment centers in the country with John Hopkins. As part of the panel, Dr Lisa Sun, pediatric stroke neurologist with John Hopkins Hospital, started the conversation with a powerful testament in the need for this bill.

“You might be surprised to hear that children have stroke. Stroke in children is much more common then people think, about as common as brain tumors in children. Some studies reflect that the risk of stroke in children is up to 8 per 100,000 and in babies, 1 in 4000 live births. That’s a huge number of patients.”
​
“It’s not usually possible to predict when a stroke in a child will occur, nor is it necessarily easy to recognize. Some kids are at very high risk for stroke. But many pediatric strokes happen in perfectly healthy children. Strokes may look different in children then they do in adults. And for these reasons it is imperative that school nurses and childcare providers be aware of the fact that children have strokes and understand how to recognize the stroke and what to do if they notice signs.”
​

Champions for Children

While Pediatric Stroke Warriors, American Stroke Association and the International Alliance of Pediatric Stroke all provided a written statement in support of this bill- it truly is the voice of the children and their families that shared among this panel and have championed this step towards heightening awareness. 

Each of us with PSW extend our thanks to Melissa Schober and Del. Mary Washington (D-43) for spearheading this bill.  Heartfelt appreciation to Brian and Laura Fitzsimons with the Laney James Foundation for the important mission with the foundation and in sharing their powerful testimony in loving memory of their daughter Lelaina James. To each of the children that bravely shared their story of stroke in an effort to make a difference for all children, you are indeed mighty and we applaud your courage.

We encourage anyone to take the time and watch all three panels of this testimony beginning at the 27 minute mark, to fully understand the importance and impact the HB668 could have not only in the State of Maryland, but as a model for all states, all communities. 

If you live in the state of Maryland and would like to get involved, please consider reaching out to your delegates and senators to ask them to support this bill. ​

Fear.

Every day we live with the fear that we got too lucky. That the scariest parts of being the parents of a stroke survivor aren't really over. Sometimes I just stare at him until he gets a shy smile and asks me "what!" as only a six year old can.

When Brayden was 2 years old, he had a stroke in the lower right part of his tiny brain. I was a day behind my wife and Brayden on a visit to my in laws. I received a phone call that Brayden was having a hard time grabbing stuff with his left hand and he was drooling a bit.

I knew it was nothing. I was the tough parent. Hadn't been to the doctor in years, and had to be missing a limb to get me to make an appointment.

We all discussed it and waited until the next day to take him in. Fear had begun to creep in on the edges of my conscious thoughts when my brother in law who is a firefighter said it sounded like the tell tale signs of a stroke.

We took him to the local emergency room that day, and were slightly relieved when we were told with confidence by the doctor that kids don't have strokes, and he probably hurt his hand. Give it a day or two on some amoxicillin for his sinus infection (must be causing the drooling) then take him in again if it doesn't get better.

We went home that night, and we knew something was wrong. My wife took him to the local Children's Hospital as she got home first. I sat in my living room waiting for word on the CT scan they were running.
​
I will never forget that night for the rest of my life. My wife called me, hysteria barely contained as she told me with a shaky voice that they saw something on the CT, and were transferring him to Seattle Children's Hospital. My best friend was there at the house with me helping me keep my mind right while I waited for word. He also gave me a hug while I cried uncontrollably for five solid minutes. My mind was working overdrive and a new thought found purchase and wouldn't let go.

My son's life was in real danger.

I jumped in my truck and raced to the Hospital where they were doing an MRI to find out more. His iron was dangerously low.

My baby boy was sick. Really sick.
​
​The MRI results came back and the doctors sat us down and gave us the news.

We were there for nearly a week meeting with some of the best doctors I've ever met. We would meet with a team of seven (SEVEN!) Neurologists while they broke down everything for us. He was diagnosed with Factor 2 Prothrombin genetic mutation. Which it turns out came from me.
​
He was so small, and so fragile. I held him time and time again as we drew blood, inserted a catheter as he hadn't urinated since he'd been under. My wife and I took strength in each other, and felt helpless as our small boy lay sleeping in her arms.

Dr. Amlie-Lefond with the Seattle Children's Stroke Program, gave us the outlook that she expected a near full recovery of all functions, and from the tests they'd run at the hospital didn't see any immediate neurological limitations, but we would need to continue to monitor him.

So here we sit, nearly four years later. Fear lives permanently within me, though it's boxed neatly in a corner. A shadow in a well lit room. But the only reason I'm able to contain that fear is because of the strength Brayden has shown.

He's had to take Iron daily for four years, along with multiple blood draws, physical therapy, speech therapy, a few check up MRI's, and a dietary plan as we continue to try and chase down his anemia issues.

Despite that, Brayden has done nothing but excelled at sports, shown above average aptitude for academics, and inherited an exceptional sense of humor and empathy from his mom. He doesn't realize the extent with which life has thrown him a curve. That strength can't be taught, only earned.

His strength has been forged through trials he's experienced that many adults would fold under. His fire red hair a testament to his will. He's the reason the fear stays at bay. He is my first born son. My light.

He is my Warrior.

​~Travis Greenwood AKA "Dad"​​

There are still days where the “new normal” of our life comes much easier than others. Days where I smile that we have somehow balanced the two worlds of everyday life and the intricate life in the medical needs world. Making the appointments that fill our weekly calendar and still managing to find the time to kiss my spouse, be present in a conversation with my teenager, let my child be a toddler or even just steal a few minutes out of a day for myself. Those are blissful days. Then there are those days, sometimes unspoken days, where the weight of this all brings me to my knees. I’m human.

It’s been four years since we were told my daughter experienced a stroke, four years since she was diagnosed with cerebral palsy, sensory processing disorder and a speech disorder. The labels have added up- but we push to never let them define her. I have learned so much along this journey with my daughter and the most important lesson came from myself. Pride. I had to learn that I didn't have to navigate this journey alone.

Parenting is tough enough, and adding in medical complexities brings on an even bigger reason to build support. Any parent of a child with medically complex needs can tell you feelings will creep up, sometimes blindside you in a moment when you were not ready to take them on or even admit they exist. Sometimes there is a trigger, sometimes more than one. For me, an emotional day of medical tests, regressing in therapy or a conversation with our insurance about the re-occurring question of “is this medically necessary?” will send me spiraling through the emotions. Years of defending my child and advocating for her needs through the red tape brings out the worst, brings out the isolation. The simple truth is, as her mom, I will always be advocating for my daughter and working through so many feelings, but I certainly don’t have to do it alone.

Nobody likes to talk about the hard days because it isn’t pleasant. You find yourself worrying what others may think if you were honest. Admitting it’s hard does not mean you are ungrateful or love your child any less. It doesn’t mean you have failed, yet as parents, we all feel we have to defend ourselves and our love when we admit to these feelings. We don’t.

It should go without saying. It hurts so much because we love our children. Because we want what’s best for them, and getting there is not simple. I removed the veil of perfection a long time ago when I realized these feelings are OK to have, that they happen and that talking real with someone that has "been there" helps you to get a handle on them.

I was never prepared to be this mom and some days I do feel as if I am failing at it, but I’m still here. I can admit when the days almost feel impossible. I can cry when I need to and no longer feel the shame in it. I let the thoughts, emotions take over just long enough to bring me full circle to where I need to be to forge ahead better. But I had to learn to do it with help, with support. I had to get vulnerable in knowing I couldn’t do it alone.

We simply weren’t meant to do this alone.

We were meant to celebrate successes and milestones just the same as we were meant to speak of the difficult times, with someone who gets it. My village may not be the same as yours, and that’s OK. Mine is filled with face-to-face conversations with doctors and therapists who care about my child, friends and family, who take the time to understand more and be supportive. My village also consists of those I have come to know and value through online support pages, families I may never actually “meet” but I know them, and they know me and these relationships have become vital. I can without a doubt admit that this support has helped me be a stronger, healthier person for my family.
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I am grateful to have these people’s stories even if it is not completely identical to my world. There are connections through it all. While I navigate the world of stroke with my child, someone else navigates something entirely different. Real life can be beautiful and messy all at the same time , but the simple truth is we never have walk through it alone, and we shouldn’t.

For some, the very thought of a child having a stroke is new. Most often we associate stroke with adults, so its usually a challenge to understand that a stroke happens among children of all ages.

For hundreds of families each year, this diagnosis becomes a reality. With limited information and resources about stroke in children many of these same families will take to the internet to find information on what to expect and how best to support their child after stroke.

​Whether you Google, Yahoo or Bing it, the internet is great tool for finding the best restaurant. But,  finding sound meaningful information regarding children and stroke- requires a little more caution.
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​Pediatric Stroke Warriors believes in the importance of being inclusive and sharing all the organizations, programs and/or sound resources that currently exist to make a difference in supporting children and their families impacted by pediatric stroke.

Most recently, our leadership team of dedicated parents, professionals and a medical advisory committee- worked together to publish a new resource, The Pediatric Stroke Warriors Family Toolkit.

​This latest Toolkit is intended to give families guidance and support on how to navigate this journey after their child has suffered a stroke. ​

​It is our hope to continue to empower and share knowledge that will help families to ask some of those important questions and advocate for a child's best care.

The toolkit includes information on:
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• Recognition and types of stroke in the pediatric population
• What to expect during acute hospital recovery and long term therapy
• Organizations, resources and websites specific to Pediatric Stroke
• Directory of common medical professionals and terminology
• Personal stories and words of advice from parents and survivors

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This toolkit is available to download on-line, included in each of our Warrior Bags and thanks to our BRAVE Initiative and partnering pediatric stroke programs- these toolkits are on hand at Seattle Children's Hospital, Children’s Hospital Colorado, Monroe Carell Jr. Children's Hospital at Vanderbilt and Children's HealthTexas. 

If you have questions, would like to learn more or want to request a printed copy of this toolkit please connect with us! [email protected]

It is a proud step for Pediatric Stroke Warriors to deliver one more tool to families as a resource and we thank our generous volunteers and supporters for making this happen together!

"Our family is grateful to Bryan Cave LLP, and our charitable group in my office of which I am a member, “Cavers Who Care”, to have the opportunity to help Pediatric Stroke Warriors raise awareness in May and also help other families know that there is HOPE. ​To those new families just now dealing with this new reality, we are here for you."

Our Journey- May 18th, 2016 is a day that is burned into my memory.  At around 2:00 a.m. I received a phone call from my wife in hospital.  Actually, by the time I finally realized the phone had been ringing I had missed 8 phone calls on my cell phone and 2 on our house phone.  By then it was past 2:15 a.m. and our sweet baby boy had been rushed to the NICU after suffering a series of seizures.  I was at the hospital within 20 minutes.  The doctors and nurses didn’t know what the problem was, but they had sedated Bobby and it would still be a while before we could be with him. The next 2 days were a blur, spent in the NICU with him.  He was regularly whisked away for various tests or specialists would come into his pod to check on him.
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It wasn’t until the morning of May 20th, our 10th anniversary, that we found out the extent of what was going on.  Two specialists had come into his pod to work with him, an occupational therapist and a physical therapist.  It was then that I knew he had a stroke as I overheard them talking about how to treat him.  I looked at Alexis, my wife, and said “It was a stroke”.  While the therapists were still in the room I demanded to speak with the doctor.  We needed to know for certain from his mouth what this was.  We needed to know what was going to happen. We needed to know that he was going to live, going to walk, going to be ok. We finally spoke to the doctor, a high school classmate of mine, and we heard those words, “Bobby had a stroke”. It was a lacunar stroke that affected about 40% of the left side of his brain and his brainstem. They tried to be positive.  They told us he would get great care. They didn’t have answers. There was no reason why.  There was no way of knowing what this will mean.

​Instead of getting answers and knowing that everything was going to be fine we, like so many other families, were left wondering what this was going to mean for his life, for our life, for our family. It was a terrifying time and the internet was not terribly helpful at first.  We read words like hemiparesis, hemiplegia, Cerebral Palsy, etc…  We spent the next six months seeing myriad doctors, home health nurses, therapists, specialists, social workers, and various folks from Arizona government agencies.  No one was able to tell us with any certainty what was going to happen and that was a sad and lonely feeling. 

​We continued to scour the internet joining stroke groups on Facebook, reading seemingly every website, every blog post, and every comment about how this happened and what the outcomes are.  We are so grateful and thankful to have found the Pediatric Stroke Warriors.  Alexis reached out and let them know about Bobby and soon a Warrior Bag had arrived filled with information, toys, and therapy items.  Beyond that we found an amazing community that has helped us and touched us and given us HOPE.  Through all of our searching, through all of our reading, through all of our despair we desperately wanted HOPE for Bobby and this group has helped us profoundly with that.  Our one constant certainty was that no matter what Bobby is our perfect little guy and we were going to love him and provide every single benefit and bit of help that we could to help him overcome whatever obstacles were in his path.
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I am so happy to report that after 6 months on Phenobarbital we were able to successfully wean him off that medication with no further seizure activity.  Also, at 6 months old Bobby had a follow-up EEG that showed no signs of seizure activity.  Continuing with that good news he had a follow-up MRI at 6 months and that revealed that the majority of the damage done by the stroke had been healed and that there was only a very small spot of damaged brain tissue that was showing.  Bobby will be turning 1 year old on May 17 and to the shock and surprise of us and his team of doctors he has never missed a milestone. He uses both sides of his body equally.  He is a happy and joyful little boy that loves to play with his older brother and sisters.  To this point there are no noticeable signs of impairment or damage from his stroke.  We saw his neurologist recently for his 1 year check up and our visit was nothing but smiles and happiness that he presents as a healthy 1 year old should.

​Bobby’s recovery is attributable to so many things:  six sleepy months on Phenobarbital allowing his brain to rest and recover;  three older siblings that he so desperately wants to play with and be like;  a team of dedicated medical professionals providing the best care possible for him;  an amazing web of friends, coworkers and extended family all lending a helping hand, caring thought, or helping organize a fundraiser;  last but not least, a group of strangers around the country sharing their stories, giving support, and helping us find HOPE.
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Making May Matter- In a show of support for Bobby, and all the other Pediatric Stroke Survivors, the law firm that I work for, Bryan Cave LLP, and our charitable group in my office of which I am a member, “Cavers Who Care”, put on a Cinco de Mayo Salsa contest with all proceeds from that event going to support Pediatric Stroke Warriors.  People all around my firm are wearing warrior bands and purple ribbon lapel pins.  The lawyers that I work with have been unbelievably supportive of my family and I cannot express my gratitude to them and to the Firm enough for the way they have rallied around us.  With May being Pediatric Stroke Awareness Month, my firm has endeavored to be purple and show its support for our cause! I am so proud to be a part of Bryan Cave, an AmLaw 100 law firm, that recognizes its people and supports them, supported me, when I most needed it.

I am eternally grateful to Kaysee Hyatt for starting this organization.  I am overcome with emotion as write this final paragraph because I know how scary this is. I also know how great it feels to find a community of people that can share their stories and grieve together and celebrate together and experience these emotions together.  My family is grateful to have the opportunity to help Pediatric Stroke Warriors raise awareness of this devastating diagnosis and also help other families know that there is HOPE.  The people closest to you care about you and are hopeful for you.  Perfect strangers thousands of miles away from you care about you and are hopeful for you.  Alexis and I care about you and your Stroke Warrior and are hopeful for you. To those new families just now dealing with this new reality, we are here for you.

Be Brave. Be Fierce. Be Mighty.
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Justin Monnet-

"Regardless of what that MRI entailed or that stroke diagnosis, they are words and pictures. They serve an undeniable purpose, but it has been my daughter who has defined her journey."

​There is no memory as vivid to any parent as the day they get to meet their child for the first time. The day all the anticipation comes full circle and they hear their child’s first cry into the world pierce the silence.

​The complications towards the end of my pregnancy made her cry even more monumental for me, even more reassuring that our beautiful girl was here. When I finally got to hold her and see those beautiful red curls, and soak in those 10 tiny toes and fingers- my little sunshine mixed with hurricane was here.​

We had a month of waiting to be seen by a specialist who performed a sedated MRI to rule out anything neurological that could account for my daughter’s behavior. We had what felt like an eternity to get those results. In that time I had poured over google to scour for every possibility, every relatable story. I drove myself to the brink of anxiety. Questioning myself, my pregnancy and any new behavior my daughter showed. I was lost, overwhelmed and scared. Friends and family tried their best to reassure me, to help calm my feelings in saying everything would be alright and that there must be an easy explanation.

When the call finally came and the doctor shared the results from the MRI, there was nothing easy about the explanation. Her words came across in slow motion indicating that the results reflected an injury to her brain from a stroke. She wanted us to make an appointment to discuss face to face and go over her scans. The call left me in shock. The relief I had hoped to feel after months of knowing something was wrong, wasn’t there. Only new questions and huge emotions to struggle through.
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The following week we sat together huddled over a computer screen with the Neurologist, scared and unsure of what all this meant for our little girl. The doctor began leading into the discussion that a stroke can happen at any age. That the risk during the newborn period happens to be the highest risk throughout our lifetime. Roughly 1-2000 newborns and my little girl was that one. The room began to fill with words and terms, Hemiplegia Cerebral Palsy, Ischemic In-utero Stroke, feeding therapy, disability, adaptive equipment. As much as we braced ourselves and as hard as we tried to retain it all and build a plan, the moment was very much surreal.

She began to show us each scan from her MRI. Different angles and "slices" of images taken of my daughter’s brain. More terms, more uncertainty until she paused on one image. It was an image from my daughter’s chin up to the top of her head. It wasn’t the dark void in the image on my daughter’s right side of her brain that I focused on anymore. But now I could see the outline of her little face, the way her chubby cheeks left an outline even in an xray, and there she was.

In that moment among the fear and uncertainty, I was grounded. Brought back to my senses that no matter what we could come to learn about this diagnosis, it would not define my daughter. She was right there. My little sunshine mixed with hurricane.​

It’s been five years, not only have we learned so much about stroke but we learned that we have to take it one day at a time. To say that it has been easy would be a lie. To be completely transparent there have still been moments of feeling lost in emotion and worry, this journey is not easy. I talk to families often that ask when they will come to terms, when will it get easier. That’s an answer that’s different for all of us. For me, I remember that moment in that room where I found my grace again and I hang on to that as tight as I can.

I try to remind parents that regardless of what that MRI entailed or that diagnosis, they are words and pictures. They serve an undeniable purpose, but it has been my daughter who has defined her journey. Not knowing what walking would be like for her, she showed us all that she was going to walk without the aid of her walker. While Cerebral Palsy very much still affects her left side, she’s learning how to use her "helper hand" and often finds her own way to do two handed activities. Our new normal simply includes the weekly therapy appointments and teams of specialists to help her reach her greatest potential and that is ok. In fact, it’s better than ok, we are grateful to all the care we have found. It’s taken a village.

The reality that stroke in children is still viewed as rare is saddening. Countless families have firsthand experience with pediatric stroke and with stroke not being preventable in children, more families will receive that diagnosis with their child. More will come to learn how to navigate the emotions, the appointments and learn how to find their strength. My hope is they never have to do it alone and that they never lose sight that their child is going to move mountains, in their own way and in their own time.

~Kaysee Hyatt, Founder & President with Pediatric Stroke Warriors​

To find out more about Pediatric stroke or to connect with other families in support please go to the family support section at pediatricstrokewarriors.org, ​

Making a difference- A couple months ago, my son was assigned a community service project for his Patriot Program in school. Being aware of what a wonderful organization Pediatric Stroke Warriors is, he decided to choose them for his project.

Will mailed letters and he asked me to post his letter to Facebook. He collected donations from our friends, family, teachers at school, and fellow twin moms. He worked so hard and it was absolutely inspiring to see him share about his sister and about what this Box meant to our family. When he had finished collecting donations, he had collected well over $600 for the Brave Boxes and Bags!
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Will wanted to help make a difference and help bring a smile to a child's face, and he succeeded! He is aware how difficult this has been at times for our own family and for Brooke. We celebrate how much Brooke is progressing, every day she improves more and Will is her biggest cheerleader, and I am the proudest mom!​

​The importance of recognizing that a stroke can happen among children of all ages.

Quite possibly, the last time you heard a stroke story, it didn’t involve a healthy-seeming newborn or a fifth-grader who went to the nurse’s office with dizziness and a headache. It most often wasn’t of a teenager who spent a “normal” day at school, only later in the evening to experience numbness down one side of their body. When you’ve never heard about stroke in children, it becomes easy to assume it must be very rare. Yet stories like these are real and are shared every day.
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For over the last two years, Pediatric Stroke Warriors has continued to strengthen communities by providing support to families and promoting advocacy, public awareness and education of current resources related to stroke in children.  Although awareness and education continues to overall increase, the most common misconception about stroke that many organizations encounter regularly , is that it only impacts older people.
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​Despite these published findings, pediatric stroke still tends to fall off the radar. It is not only parents who may overlook the signs and symptoms of pediatric stroke - doctors can too.  Many children with stroke symptoms are misdiagnosed with more common conditions that mimic stroke, such as migraines, epilepsy or viral illnesses.  For as long as the viewpoint continues to be that stroke in children is rare, the awareness is not acted on.
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While you may know how to recognize that an adult is having a stroke, the signs and symptoms can differ in children. As can the risk factors for pediatric stroke.  The reality that there are many more cases of stroke in adults, does not dismiss the fact that the recognition of stroke in children is just as important and should be talked about.
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The question most often asked, "What can be done to keep pediatric stroke on the radar?" The simplest response is in getting informed and sharing what you know. While it may not be your child, chances are, it will be someone’s child because the statistics are real. Moving away from “rare” to educated, increases the chances of a child receiving a proper diagnosis and quicker treatment.

​Pediatric Stroke Warriors encourages anyone to reach out, gain knowledge and to always consider the possibility of stroke no matter what a person’s age. 

Learn more about our BRAVE Initiative in Building Resources and Vital Education.
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Written and shared by Courtney Harper Bosley

Well, here we are...October 22nd. It was the best day of our lives--Geoffrey and I were married on Myrtle Beach and then 2 years ago on the same date we almost lost our baby. It turns out, it is still one of the best days of our lives. Celebrating our anniversary and our son.

You never want to think about your baby being in the hospital or hurting, never. But I will forever be changed by what happened that morning when Leo first had his stroke. I will never forget the way he looked or sounded. I try so very hard, but it is something that may never leave my head. There are certain things that were said, even certain smells that immediately take me back to that day.
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We had such support from everyone-family, friends, coworkers, Facebook friends, even people we didn't know that just saw his story. We never would've been able to get through that time in our lives without the love and prayers.
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Children are amazingly tough and I didn't really know that until we saw Leo go through everything he did. Everything he overcame and continues to overcome.

Some people that have strokes are affected physically and others may just be affected cognitively. We're blessed in that Leo is still the same Leo he was before. He can't walk by himself right now but he can tell a great poop joke! He will more than likely forever be affected in some way by his stroke, but we will do whatever we can to get him the best care and support possible. He has a long road ahead - but we know one day he will walk on his own. Maybe with some help, he may even drive on his own, he will do all the things he wants because he is determined, he is our warrior!  ​

Hug your babies and hug your family. Tell them you love them because you honestly never know what may happen in an instant. Be grateful for what you have because someone out there is wishing they didn't have to worry about their child walking one day or eating on their own.

Today, we celebrate so much in our life, our love and our family! And I extend so much Love to all and thanks for so many who have always being supportive of Leo and showing him so much love. He loves hearing your messages!!
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I just ask for one request, will you let people out there know kids have strokes too. We didn't know, and I don't think a lot of people do- but it happens, in an instant it can happen. Far more often than most realize. The faster you react, the more you know- the better future for so many children.  #kidshavestrokestoo #love #pediatricstrokeawareness
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Almost 4 years ago we were given that medical diagnosis. Perinatal Ischemic Stroke. When I say “given”, it was more like a line drive straight to the stomach and heart, blindsided by such a medical diagnosis. The breath was removed from our lungs, the questions that flooded our minds but left us speechless, the very reality we knew… gone, in an instant. Those memories and emotions that came with it, can still feel staggering to me at times when I think of those first days when we were told that our daughter had suffered a stroke.

I assure you, this is not just a moment that our family faced, it’s a reality for countless families. For children of all ages.  Even though stroke is relatively common in children, there are scores of medical professionals that have never even treated a child who has had a stroke or received the education to know how. It took over 6 months for my daughter to be diagnosed with the stroke that she had been born with and further time to build the right medical team for her ongoing care. As parents, it took us even longer to find the right family support and to learn we were not alone.

When I think of all of this, and the fact that there are so many other families with these same stories, whether from birth or with an older child it leaves me with so many wishes for our children. So much that I wish everyone knew about pediatric stroke and the reality for so many kids. Some days I underplay what it’s like, this journey with a child and stroke. Sometimes I guard my words and worry I will scare someone with the facts about Pediatric stroke. But, maybe just maybe, we need to make ripples in the water for change. I want the words to sink in, to mean something to you. To spark a desire to bring the needed visibility to awareness, to give our children’s generation and parents a voice against stroke.

The real Warriors: A brain injury can’t be seen on the outside. You can’t see the void, the permanent damage on the right side of my daughter’s brain left from her stroke. With a simple glance, you may not even notice that her left side is weak, that she can’t use both her hands equally or that her left heel never strikes the ground when she walks.  The amount of work her little brain and body goes through to process stimuli in the everyday world is beyond anyone’s comprehension, even mine- but I know it’s work for her. I know the strength it takes for my daughter every moment to overcome the challenges in her body because of her stroke and I know she’s not alone.

Of children surviving stroke, roughly 60% will have permanent neurological deficits, most commonly hemiparesis or hemiplegia, a form of cerebral palsy. Beyond the initial stroke, there is the added risk of re-occurrence, the possibility of seizures and other long-term disabilities that affect children.  Therapy and rehabilitation very much becomes a normal part of daily life throughout childhood. These children experience a life most adults can’t even comprehend with constant tests, surgeries, therapy and medication- and they do so with such an unstoppable force. Overcoming so much one day at a time. Caregivers will often get the bulk of the credit, praise for doing exactly what anyone would do out of love, but its these children that are the real warriors.

Be the change: A stroke can happen at ANY age, and yet with the limited information and resources out there about it, Stroke is often the last thing thought among many medical professionals or families when it comes to a child. Many well-meaning attempts with articles trying to bring light to awareness are overshadowed by calling stroke in children “Rare.” Know this, a Stroke is a medical emergency at ANY age, and the shear chance that it can happen to your child, demands attention to the signs of Pediatric Stroke.

The harshest reality is that stroke in children is among the top 10 causes of mortality. It has to matter. It has to matter to medical professionals so that they can learn more about it, how to recognize it and how to treat it in a timely manner. It has to matter to anyone that has a child or works with children because if those signs of stroke were ever present, every second counts.
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My hope, a hope shared by so many is that you will help to amplify the awareness- to get the word out. To cause a ripple effect in the knowledge that strokes in children are indeed real and how important it is to recognize the signs rapidly. If it makes a difference in one child’s life, then you can bet the awareness you shared is worth its weight in gold.
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I was a child when my grandmother had a massive stroke that changed her life dramatically. It changed all our lives dramatically. I suppose it was that intimate knowledge of stroke that contributed to the idea in my mind that strokes are reserved for older individuals. Adults who may have higher health risks.

I’m not alone in my thinking, as many think of stroke as an “adult disease.” One that can potentially be avoided by lowering risk factors and maintaining good health. Don’t get me wrong, taking care of yourself and having good health is so important, but it also creates blinders to a world we live in.

Sometimes, with no apparent risk factors, we face a major diagnosis that changes everything. Whether it be personally, a family member, a friend or worse, your child. It’s a painful reality that our children can face diseases such as Cancer, Arthritis, Juvenile Diabetes and what we are dedicated too, Stroke.

The very idea that a stroke can happen at any age feels like new information to many. In fact, for many parents whose child has had a stroke- it’s through that diagnosis that we ever come to learn of the possibility of pediatric stroke. It’s a painful reality to countless families each year and a slippery slope to navigate a diagnosis of stroke in your child. I know this, because three years ago I was that parent.

I was that mom learning that my child had suffered a stroke at birth. I was that parent scouring the internet for any applicable information on stroke in children. Seeking resources that could potentially help my daughter reach her greatest potential and help support our family in the process. I had believed we were alone, that our family was rare, for many months. The moment I realized that there were families who have “been there,” organizations that existed and that were willing to share and provide support, was the moment I could begin breathing again. It’s a feeling I have heard many share.

The first time I heard the phrase “Pediatric Stroke Awareness Month.” I remember the competing feelings I felt in that moment. “Do I share?” “Do I open up my private life to potentially help someone else?” I remember reading stories of beautifully brave children and their families- celebrating huge milestones their child had made. I also remember the first time I read of and talked to a family who experienced the greatest loss of all, the loss of their child to stroke. That first May, Pediatric Stroke Awareness month, changed me forever. It changed my family forever. There was no longer the ability to dismiss the importance in awareness, or doubt that change can happen. There is strength and hope in numbers.

Last May, Pediatric Stroke Warriors was officially founded and recognized as a 501c3 in Washington State. We went from being known as a family dedicated to awareness, to an organization with volunteers across the PNW dedicated to this important change for pediatric stroke. Resources, support, visibility to education- we took a giant leap, and have never once regretted it. In 2 weeks, we host our first annual “Wishes for Warriors” Dinner and Auction fundraising event and its with anticipation that this will be a month of huge possibilities! May will always serve as that important month to us for getting others involved and #MakingMayMatter.

It is with great hope and with an ask- that all take some time this month to plug in, to join us and other organizations and families in Pediatric Stroke Awareness month. From virtual campaigns, speaking engagements, walks and “streak events” all creating awareness among communities, it’s hard to overlook the efforts. So, if you find yourself asking what’s this all about and is this important? Know that it is. Know that the simplest acts of taking part this month do matter and you do make a difference.
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Be Brave. Be Fierce. Be Mighty.
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#PediatricStrokeWarriors