Making a difference in the lives of pediatric stroke survivors

By Michelle Ballasiotes. Michelle is a pediatric stroke survivor. She can be reached through her Facebook group, Youth Advocates for Pediatric Stroke, as well as the the KISS Pediatric Stroke Facebook group.

There seems to be a lot of resources and information for adults who suffer strokes, but what about children? Most people don’t realize that a stroke can also happen to children, teens, babies and even the unborn, leaving lifelong disabilities.

I know this first hand, having suffered a stroke before I was born. As a result, I am missing a portion of the left side of my brain that leaves me with hydrocephalus, right hemiplegia, and short term memory deficits. I’m considered a “lucky” survivor because I started weekly occupational and physical therapy at just six months and continued for 10 years in order to reach my full potential. And unlike many global survivors, I benefitted from access to high quality health care and good health insurance.

Stroke in babies, children and adolescents is often misdiagnosed or not diagnosed due to the lack of awareness that the condition can happen in this population. Yet every year, stroke occurs in five of 100,000 children. Of those who survive, more than 60 percent suffer permanent neurologic deficits.

Further, when a child suffers a stroke, the family may feel alone and vulnerable because supportive community resources and medical treatments are not universally available. This is a global challenge even in high-income countries like the United States.

My family saw this first-hand and took steps to support me and others like me. My mother started a local support group. Guest speakers and doctors came to the quarterly meetings, and we had annual community picnics. Despite physical limitations, kids would storm the playground and meet other children just like themselves. I would often give words of encouragement and answer questions from parents of younger stroke survivors. I cannot emphasize enough the importance of a caring community for both the parents and children.

After six years locally, there was enough interest that my mom created a global organization, the International Alliance for Pediatric Stroke (IAPS). It partners with AHA and the University of North Carolina to produce resources and publications for families, patients and healthcare providers. The website is very comprehensive and has a vast number of publications, resources, current news, research, a list of organizations worldwide and inspiration. Information and inspiration are so important for survivors and their families.

Recently, I learned about a program by a mom with a pediatric stroke survivor. Her organization, Pediatric Stroke Warriors, assembles “Brave Boxes” that are given to children before they go into surgery or have a major medical appointment. The box contains toys and other fun goodies based upon the child’s age and is designed with the dual purpose of distracting the child and easing parents’ nervousness to see a happy child. Parents aren’t left out, either. They receive “Warrior Bags,” with educational tools from IAPS and lists of local and national resources so they can see there is a caring community surrounding them.

I just started my freshman year of college and hope to give back by starting a program with hospitals near my university that would create communities of care for pediatric stroke survivors. Ideally, it will be a peer-led mentoring program for other children affected by stroke.

Pediatric stroke survivors like me will need a lifetime of ongoing care, treatment and support. The same is true for everyone suffering from a noncommunicable disease. If you’re wondering where to start, try the American Heart Association’s Patient Support Network, the American Stroke Association or some of the other resources mentioned in this post. Together we can make a difference.