Stories

Cerebral Palsy Strong, #CPStrong
An online community for young adults and teens with cerebral palsy. A space where you can share your CP story and read what others are doing to navigate the every day, just a little differently.

Four Teen Stroke Survivors: Their Inspirational Stories
All four of these girls from Kansas City, MO suffered massive strokes during their high school careers. After long and hard recoveries, all four were able to graduate on time. This is a powerful, inspirational video and a reminder that strokes can happen at ANY age. The full version of this video can be found here.

Stroke Survivor Testimonials Exhibition, compiled by the World Stroke Organization, 2018
Ebook of testimonials from people who have survived stroke, including many children.

When the Neurologist Really Knows How Patients Feel
This neurologist, who is also a pediatric stroke survivor, states, “I can’t undo the damage of a stroke I had as an infant, but I can try to help other patients face similar diagnoses.” Published in the New York Times, 2018

Pediatric stroke: One mother’s quest to raise awareness
CTV AM (Canadian TV) interview with a parent of a perinatal stroke survivor and one of the leading pediatric neurologists, Dr. Gabrielle deVeber.

Sick Before Their Time
When diseases that typically occur in adults affect children, diagnosis, treatment, and recovery can be daunting. Advice from families, patients, and other experts can ease the journey. Published in Neurology Now/Brain & Life online, 2017

Braden’s Everly’s Story from the American Heart Association — Denver 2016 Heart Ball
Braden was a healthy 12 year old boy who loved life and lived for playing football. He was at a friend’s pool party when he started to feel like something was wrong. Braden lost all color in his vision, he struggled to understand anyone who was trying to help him, and he completely lost his balance. He lost his ability to walk and talk and his speech was slurred. Even with those symptoms, his stroke wasn’t diagnosed until one week later. He underwent three brain surgeries and spent the next year slowly regaining his speech and basic gross motor skills. Watch this powerful video and see how suffering a stroke at age 12 has shaped his life and given him the impetus to make a difference for others.

Surviving and Thriving After Pediatric Stroke
The NCD Alliance website features inspirational stories of people living with a non-communicable disease. Michelle Ballasiotes shares her story of how a prenatal stroke has impacted her life. Surviving & Thriving After Paediatric Stroke.

Jackson’s Journey
Coordinating care for a child who has special needs can seem overwhelming and daunting at first. Consulting with medical professionals to build a team is one of the first steps. See how these very inspirational parents are advocating for their son Jackson with a wonderful team of specialists at Swedish Hospital in Seattle. It is a powerful story of hope and optimism.

Emily Simpson: Children and Young People’s Courage Award
Emily Simpson was just 10 years old when she suffered a stroke in July 2012. The Stroke Association presents the Courage Award to someone who is under 18 and demonstrates inspirational courage in overcoming personal, physical, emotional and communication problems after their stroke. We think you will see why this remarkable young girl was the recipient by reading about her here and watching the powerful video that is posted on that page.

A Parent’s Perspective: Dear Mama of 2009
Jamie Jonz shares a beautiful message of inspiration and hope on the 7 year anniversary of her son Aidan’s stroke. Dear Mama of 2009. Shared with permission from the blog pages of Pediatric Stroke Warriors.

Gracie Doran
At age 10, Gracie Doran suffered a stroke. Today she is a dancer, motivational speaker, advocate, teacher, ?choreographer, and ?writer. You can see her inspirational from the American Heart Association here.

Derek Marshall
At 17, Derek Marshall suffered a stroke and needed brain surgery. Staying positive has helped Derek meet his goals — graduating high school and heading to college — and now he’s sharing his words of wisdom with other kids who’ve experienced a stroke. Read his story here from Children’s Hospital of Philadelphia Pediatric Stroke Program newsletter. Derek is also the author a book of poems, Somehow.

One Minute on the Ice From Doug and Leah Chaulk
Teenagers may think they’re invincible, but one St. John’s family found out how untrue that is. Canada NTV’s Glen Carter speaks with Doug and Leah Chaulk, whose 15-year-old son, Jordan, was struck down by a stroke while playing hockey. “One Minute on the Ice” Part 1 and Part 2 highlight Jordan’s story.

Real Mom: My Baby Had a Stroke
Writer Lisa Applegate shares a mother’s perspective of raising a son who suffered a perinatal stroke in Parents Magazine. My Baby Had a Stroke.

Ryley Williams: Heart of a Champion
Ryley was a healthy 15 year-old at football practice when he collapsed on the field. Hours later, his mom learned he had suffered multiple ischemic strokes. After many weeks in the hospital and intense therapy Ryley’s brain had to start all over again. Re-learning every basic motor skill. Five years later, Ryley’s mom shares what life has been like since Ryley’s stroke.

Alexis Loves Basketball, video
Alexis is our daughter. She is 11 years old and the most amazing kid ever! She had a stroke when she was born. They told us she may never walk or talk. She has been out to prove everyone wrong ever since. She is the most determined, strong and loving kid. Alexis fell in love with basketball at the age of 2. She got her first hoop that summer has been practicing ever since. She spends all summer in the driveway shooting hoops! Alexis is so amazing and I hope she inspires you as much as she does us!

Hi ya, I’m Jennifer, right hemi since birth….By Jennifer McIntosh, young adult, U.K.
Firstly I have to say hemiplegia is so frustrating, you have no idea. I can sit and sit just willing my right arm to reach to pick up a pencil I’ve dropped on the floor, and it feels like my arm is being purposely defiant, laughing at me trying so hard and having little success.

When your children play they probably feel as I do, anger at their body for not doing as it’s told. They have no way to get across their feelings, particularly if they are too young to verbalize them or if they have learning difficulties, so anger is the only way they can get across the frustration and hurt they are feeling inside, the injustice of it all.

They will realize in time that there isn’t any rhyme or reason in the whole hemiplegia business. With your help they’ll learn, just as I did, that there’ll never be an answer to the question “why me?” and they’ll accept that and carry on with their lives regardless. In the meantime – as silly as this seems – be grateful for their anger, it’s a means of communication, ok it’s not the best way to communicate but still it’s the best your children can do for now. They have anger so they have energy, they have the ability to think, to know, that hemiplegia is frustrating. If they were calm all the time, if hemiplegia didn’t bother them, if they weren’t concerned they can’t run as fast or as far as their classmates etc. then they’d never try and they’d never want to reach their full potential.

So you have to – somehow – encourage them, find a positive way for them to release their anger. Keep telling them it’s ok to be angry, you would too if your arm and leg were weak/hurting but anger is not productive and it certainly is not ok to bite etc. because it hurts, and hurting someone not a nice thing to do. I know you’ll probably have tried that a million times already but keep saying it! Re-enforcing it will help it sink in. As they get older, tell them it’s not their fault, it’s nothing they’ve done, and they’re not alone, you will always be there for them to talk and you love them more than anything in the world. You have to have the patience of a saint, but it’ll be worth it. Anger will turn into tears but then they will calm down and peace will be restored.

It will get easier, I promise.
Reprinted with permission