Family Support

Pediatric Stroke Centers

Pediatric Stroke Family Support

Hospital based Pediatric Stroke Support groups are an area of need that are growing. Pediatric stroke support groups provide a re-occurring meeting place for parents to discuss topics, share stories and help ease the isolation that is common after a child’s stroke. Check with your child’s medical team and ask if the hospital has this type of program for your family to take part in.

Many parents have expressed the desire for an ongoing family support group, but that there is simply no time to fit one into their schedule. This is especially true as you begin balancing medical appointments, care, career, family and all of the many details of everyday life. If time restrictions make it hard to prioritize support, there are a number of online and social media support pages that exist.

Virtual family to family support groups allow you to connect and ask questions on your schedule - without leaving the comfort of home. Having those connections with other families who have “been there” is a proven source of ongoing support that we encourage you to consider joining. We have included a number of these virtual support groups in this toolkit, find one that works best for you.

Hospital Based Support Programs:

Calgary Pediatric Stroke Parent Support Group– Monthly meetings
Children’s Colorado Pediatric Stroke Support Group– Monthly meetings
Children's Hospital of Philadelphia Pediatric Stroke Parent Support –Monthly Meetings

Online Support Resources:

American Heart and American Stroke Association Support Network for Pediatric Stroke: This Support Network offers a dedicated Pediatric Stroke discussion board where you can connect with other families and caregivers, share your stroke experiences, and give and get emotional support and encouragement. Set up a profile at Supportnetwork.heart.org

Virtual Facebook Pediatric Stroke Family Support Groups:

CHASA Hemiplegia Parent Support (National) https://www.facebook.com/groups/1419182238299142/
Children's Stroke Support for the Midwest (Regional- Kansas, Missouri) https://www.facebook.com/groups/419338365119767/
Hemi Help (UK) https://www.facebook.com/groups/5512952137/
KISS Pediatric Stroke Support Group (National) https://www.facebook.com/groups/829527060489244/
Little Stroke Warriors Support Group (Australia and New Zealand) https://www.facebook.com/groups/1214183908703615/
(MISS) Moms of Infant Stroke Survivors (National) https://www.facebook.com/groups/122984791109944/
Moms of Pediatric Stroke Survivors (Tennessee) https://www.facebook.com/groups/140745609765497/
Pediatric Stroke Support Group of Colorado (Rocky Mountain Region) https://www.facebook.com/Colopedsstroke

Organizations focused on Pediatric Stroke

American Heart & Stroke Association is dedicated to building healthier lives, free of cardiovascular diseases and stroke for all ages. That single purpose drives all they do.

Canadian Pediatric Stroke Support Association (CPSSA) was founded in 2011 for children and their families impacted by pediatric stroke. The CPSSA is a joint effort between clinicians and families to build relationships and strengthen communication for the purpose of research, awareness, and support. It is the CPSSA's vision to provide a compassionate community for Canadian families impacted by pediatric stroke.

CHASA- Children's Hemiplegia and Stroke Association CHASA, is a nonprofit organization founded by parents of children with hemiplegia in 1996 to provide information and support to families of children who have hemiplegia, hemiparesis, or hemiplegic cerebral palsy.

Children's Stroke Foundation of the Midwest is dedicated in building a community of survivors and those who love and support them.

HemiHelp (UK Based) Provides information, support and guidance to people with hemiplegia and their families in the UK.

Fight The Stroke Exists to meet the need for knowledge and support to the families impacted by the management of a survivor from stroke; to educate the awareness that children, even those not yet born, can be affected by stroke; to inspire new generations and foster the development and adoption of therapies.

International Alliance of Pediatric Stroke (IAPS) was established to facilitate collaboration among the many worldwide pediatric stroke communities.

Laney James Foundation For Pediatric Stroke The Mission with the Laney James Foundation is to improve awareness of Pediatric Stroke, raise funding to support research into vascular diseases and provide adaptive equipment to children who have suffered from stroke.

Strokidz (Australia) Strokidz are a group located in Melbourne, Australia that was formed to provide support for children and families affected by stroke.

World Pediatric Stroke Association Formerly Brendon's Smile, was officially founded in 2009 as a 501(c)3 not-for-profit organization to raise awareness of pediatric stroke. To increase awareness and knowledge among both the general public and medical professionals about strokes and cerebrovascular disease in the unborn, newborns, and children up to 18 years of age. In 2015 they expanded their mission to support research that involves those impacted by pediatric strokes.

Recommended Books & Publications

The Brain That Changes Itself by Norman Doidge

Healing the Broken Brain by Dr. Mike Dow

The Boy Who Could Run But Not Walk by Karen Pape, MD

Raising A Sensory Smart Child by Lindsey Biel

The Cerebral Palsy Tool Kit: From Diagnosis to Understanding by CPNOW

I See You Little Naomi by Stefanie Boggs -Johnson

The Little Dark Spot: How I came to terms with my Baby's Stroke by Helene Louise

The Luckiest Girl in the World: My Story of Struggle & Hope in Overcoming Pediatric Stroke by Jamie Lee Coyle

Pediatric Stroke Warriors Family Toolkit

Pediatric Stroke Rehabilitation: An Interprofessional and Collaborative Approach

Organizations supporting medical financial assistance

The following organizations, resources and programs can change in what is available to support the medical financial assistance to families. It is important to refer to each organizations individual website for all details and guidelines.

Alyssa V. Phillips Foundation, assists children with cerebral palsy to help with therapies or other medical treatments that insurance doesn’t cover. The Foundation may provide financial support to those impacted by CP so that they can receive ongoing and necessary therapy treatments or medical equipment to increase independence where such benefits are not covered by medical insurance.

Air Charity Network, has been coordinating free air transportation for children and adults with medical needs for over 25 years. Air Charity Network is comprised of network member organizations serving all 50 states. For general guidelines, restrictions and a full directory, refer to their website

CHASA (Children’s Hemiplegia and Stroke Association), exists to improve the quality of life for children and their families affected by hemiparesis or hemiplegic cerebral palsy due to pediatric stroke or a variety of other conditions. CHASA helps with financial needs through their orthotic grant program, educational, retreat and athletic scholarships.

Firsthand Foundation First Hand is a public charity that provides funding for individual children with health needs when insurance and other financial resources have been exhausted. They have also created and support programs that identify issues before they become critical and that empower people to take charge of their health.

The Laney Jaymes Foundation Adaptive Equipment Grant Medical equipment and other adaptive products greatly improve the quality of life of children and families who have experienced stroke. The Laney Jaymes Foundation looks to provide financial assistance in securing this equipment for a child and their family. Applications open year round

Medicaid A federal government managed website by the Centers for Medicare & Medicaid Services. Learn more about state specific services and guidelines at their website.

MY GYM Challenged America, (MGCA) accepts applications for children with physical, cognitive and/or developmental disabilities and those coping with chronic illness. Requests, may include but are not limited to: rehabilitative therapy, assistive devices, medical equipment and sensory items

Ronald McDonald House is a network of Chapters have been making children happier and healthier by keeping families close - giving them a place to rest and refresh. These programs, tailored to meet the urgent needs of each community, can be found in more than 64 countries and regions across the globe. Find your local RMHC at their website.

The Lindsay Foundation, is a 501(c)3 non-profit organization whose primary goal is to assist families with the resources necessary to provide medical treatment, therapies, and rehabilitative equipment grants in order to improve the quality of life for their special-needs children

United Healthcare Children's Foundation UHCCF provides financial help/assistance for families with children that have medical needs not covered or not fully covered by their commercial health insurance plan. They aim to fill the gap between what medical services/items a child needs and what their commercial health benefit plan will pay for.

Wheel to Walk Foundation The Wheel to Walk Foundation is a non-profit organization that helps children with disabilities, 20 years of age and younger, obtain medical equipment or services that is not provided by insurance. We purchase items such as therapy tricycles, wheelchairs and wheelchair modifications, gait trainers, adaptive strollers, shower chairs, patient lifts, special beds, orthotics, communication devices, and speech therapy.

General Special Needs Resources

AccessSportAmerica inspires higher function and fitness for children and adults of all disabilities through high-challenge sports and training.

Accessible Playground is a web based center for information regarding Accessible playgrounds for children of all ages. Provides a nationwide state-by-state playground directory and playground resources.

CampResource Provides an online Summer Camp Directory for children of all ages and abilities listed by state.

Center for Parents Information & Resources (CPIR) serves as a central resource of information for families

Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of diagnosis and management of care have the ongoing support of those dedicated to treatments and cures.

Disabled Sports USA provides a national directory of adaptive sports near you.

Early Childhood Technical Assistance Center; ECTA : provides a National Directory for finding early intervention services in your state/community and also provides an array of policy/information for programs.

Epilepsy Foundation, a national non-profit with more than 47 affiliated organizations throughout the United States, has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The Foundation works to prevent, control and cure epilepsy through community services; public education; federal and local advocacy; and supporting research into new treatments and therapies.

Family Voices is a national nonprofit, promoting quality health care for all children and youth, particularly those with special health care needs.

Kids' Waivers knows just how Medicaid waivers for children are unfortunately quite confusing. Not only that, but it is impossible to find information about them. This project coordinated by Complex Child Magazine provides a State-by-State listing intended to simplify the process as much as possible.

Parent to Parent USA provides emotional & informational support for families of children who have special needs.

Seattle Children's Center for Children with Special Needs improves and promotes the health and well being of children with special health care needs and their families.

SeriousFun Children’s Network provides “Play with purpose”- 30 camps and programs worldwide, many free of cost

Sibling Support Project is a national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with medical needs. Find a local SibShop program within your community (www.siblingsupport.org).

SportsAbilities provides a resource for people with disabilities to find recreational, advocacy, support, and sporting activities in the nation. Check out their calendars for every state and 27 different activities ranging from Team Sports to Social Gatherings.

The Arc provides assistance to individuals with disabilities and their families in locating resources and community services nationally through their chapters

Understood provides resources to help parents work constructively with schools and professionals.

United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP and its nearly 68+ affiliates have a mission to advance the independence, productivity and full citizenship of people with a broad range of disabilities by providing services and support.

Commonly used medical professionals...

Cardiologists study the heart and its functions.

Developmental pediatricians are specially trained pediatrician who is primarily concerned with the evaluation of children’s development.

Developmental psychologists study the physiological, cognitive, and social development that takes place throughout life. Some specialize in behavior during infancy, childhood, and adolescence.

Genetic counselors are specialists who assess whether the stroke may be due to an inheritable condition.

Hematologists diagnose and treat diseases of the blood. A child who has had a stroke may see a hematologist for blood tests to determine if there is a clotting disorder.

Occupational therapists (OT) help children improve their ability to perform tasks in their daily living. They help children succeed in their “occupation” of learning, playing and growing. They may help children with tasks such as improving hand function, strengthening hand, shoulder and torso, and eating skills.

Orthotists are responsible for the provision of orthoses (supportive devices such as braces) to children with muscular and skeletal disabilities.

Pediatric Neurologists diagnose and treat diseases that involve the nervous system in children. Children may see a neurologist to discover the cause of their condition, recommendations for treatment, diagnosis and treatment of a seizure disorder (epilepsy) and for other information concerning their condition.

Pediatric ophthalmologists can evaluate how well the eyes work together, exam vision and health of eyes, prescribe glasses, diagnose eye disease and perform corrective eye surgery.

Pediatric orthopedic surgeons are concerned with deformities, injuries, and diseases of the bones, joints, ligaments, tendons, and muscles. Treatment provided by an orthopedist may include manipulation, the fitting of braces or other appliances, exercising, and surgery.

Physiatrists (also called Physical Medicine and Rehabilitation Specialists) are familiar with rehabilitation from injuries including stroke.

Physical therapist (PT) provide services that help restore function, improve mobility, relieve pain, and prevent or limit permanent physical disabilities of patients suffering from injuries or disease.

Neonatologists are specially trained pediatricians who study the development and disorders of sick newborn children.

Neuropsychologists study the relation between the brain and behavior.

Speech-language pathologist (SP) assess, diagnose, treat, and help to prevent speech, language, cognitive, communication, voice, swallowing, fluency, and other related disorders; audiologists identify, assess, and manage auditory, balance, and other neural systems.

Commonly used medical terms...

Amblyopia- is the medical term used when the vision in one of the eyes is reduced because the eye and the brain are not working together properly.

Apnea- means cessation of breathing. It is common for premature newborn infants to stop breathing for a few seconds. They almost always restart on their own, but occasionally they need stimulation or other drug therapy to maintain regular breathing.

Arterial ischemic stroke (AIS): Brain injury caused by blockage of blood flow in an artery caused by a blood clot or narrowing of the artery.

Cerebral Palsy - This is an abnormality of muscle control that occurs because of a brain injury. It affects muscle strength, coordination, and may cause spasticity of muscles. It may or may not be associated with mental disability. Children with cerebral palsy may have difficulty with walking, speech, hearing and arm/hand coordination. The amount and type of involvement of these functions is variable and can be hard to predict at birth.

Cerebral sinovenous thrombosis (CSVT): Impaired brain function or brain injury caused by blocked drainage of blood from the brain by clotting in the brain's venous system. It may go away before permanent damage is done to the brain or it may cause an ischemic stroke or intracranial hemorrhage.

Cognitive development - the process of becoming aware of thoughts and perceptions, characterized by understanding and the ability to reason. Children develop their cognitive ability over the first two decades of life.

Congenital heart problems – Birth defects of the heart present at or before birth. Some heart malformations may not be apparent for several days to weeks after birth.

CT scan – Computerized tomography scan. This is a specialized procedure that takes multiple X-ray pictures at various angles and then integrates all of them into pictures of high resolution. In infants and toddlers, it is most commonly used to image the brain.

Epilepsy – sometimes called a seizure disorder, is a chronic medical condition produced by temporary changes in the electrical function of the brain, causing seizures which affect awareness, movement, or sensation.

Hemiplegia – Paralysis on one side of the body.

Hemiparesis – Partial paralysis or weakness on one side of the body.

Hemorrhagic stroke – Hemorrhagic stroke occurs when a blood vessel that is damaged or dead from lack of blood supply, located within an area of infarcted brain tissue, ruptures and transforms an “ischemic” stroke into a “hemorrhagic” stroke.

Hypertonia – too much muscle tone, with too much resistance to passive movement. Also referred to as spasticity.

Hypotonia – decreased muscle tone. The infant may feel limp or “floppy” when held. Some of these infants may even have difficulty breathing.

Individualized Education Program- an IEP is the legal document that defines a child's special education program. It includes the classification under which the child qualifies for Special Education Services, the services the team has determined the school will provide, his yearly goals and objectives and any accommodations that must be made to assist in learning

Intracranial hemorrhage- Bleeding in the brain that leads to brain injury. Arteries and other small blood vessels create pathways throughout the brain that bring blood from the heart. If these arteries or blood vessels weaken and burst, they can cause a hemorrhagic stroke.

Ketogenic diet: high-fat, low-carbohydrate diet sometimes used to control seizures

Lobe: one of four major portions of the brain named after the overlying cranial bones: frontal, parietal, temporal, and occipital

Orthotic: leg brace or splint that is designed to control, correct, or compensate for impaired limb function

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