By AMERICAN HEART ASSOCIATION NEWS

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Ryley Williams was 15 years old, a 6-foot-2, 220-pound football player – and he was also the victim of a stroke.

Today, nearly three years after intense surgeries and still in ongoing physical therapy, he will be testifying before Congress on Wednesday to promote more funding for research and awareness about pediatric stroke. He and his mother will appear before a Labor, Health and Human Services Subcommittee of the House Appropriations Committee.

His mother, Terri Rose of Bentonville, Arkansas, who will testify with him, said she wants lawmakers to remember Ryley when they start working on the budget.

Ryley Williams“I want them to remember his face, and that awareness and research has to be there,” she said. “If we hadn’t been sent to (Arkansas Children’s Hospital), and this hadn’t been caught, he wouldn’t have made it. I’m positive this is happening all across the country, and this just needs to be known.”

According to a 2011 article in the journal Emergency Medicine International, the reported incidence of combined ischemic and hemorrhagic pediatric stroke have a wide range, from 1.2 to 13 cases per 100,000 children under 18 years of age. But “pediatric stroke is likely more common than we may realize since it is thought to be frequently undiagnosed or misdiagnosed.”

The paper, authored by Dr. Daniel Tsze of Columbia University and Dr. Jonathan Valente at Brown University, said 10 percent to 25 percent of children with a stroke will die, up to 25 percent will have a recurrence and about two-thirds will have “persistent neurological deficits or develop subsequent seizure disorders, learning, or developmental problems.”

Rose said that initially it was tough for Ryley to connect with anyone else like him who had had a similar experience. One day he was an “all-out jock” warming up for football practice and the next he was in an intensive care unit dealing with the aftermath of multiple strokes.

He learned of other young stroke victims through Bellaflies, a Lowell, Arkansas, foundation that raises money for children’s hospitals, builds pediatric stroke awareness and promotes pediatric stroke research in medicine and testing worldwide. It was created in memory of 3-and-a-half-year-old Isabella Cheree Paquette who died in 2011 after becoming suddenly ill with a virus that caused brain swelling and then seizures and strokes.

According to the International Alliance for Pediatrict Stroke, older children with congenital heart defects, immune disorders, sickle cell anemia or problems with blood clotting are at risk for stroke. Also at risk are previously healthy children who have hidden disorders such as narrow blood vessels or a tendency to form blood clots easily.

Ryley’s condition came about from a bacterial infection that had built up on a heart valve, but doctors were never able to determine what kind of infection it was, and how or why it got there.

Overall, stroke is the fifth-leading cause of death in the United States. Yet the National Institutes of Health, funded by Congress, invests 1 percent of its budget on stroke research.

Ryley and his mom want to change that. He knows how fundamentally his life has been altered and he wants to use his experience to help others.

“It’s been a tough journey, not just physically, but mentally hard to accept my new limitations and lifestyle,” he wrote in an advocacy blog for the American Heart Association, about a year after his stroke. “I want to tell other stroke survivors to not give up, even a tiny progress is progress, and it’s further than you were a week ago. … No matter what, I am alive and I am thankful that I am still on the earth to help others that have been through what I have been through.”

Rose said her son is working as a cashier at Walmart now and plans to go to a two-year program to become a physical therapist’s assistant and then go get his master’s degree.

“His idea,” she said, “is that he wants to be able to say to someone, ‘don’t give up, I’ve been where you are.”

Photos by Fred Watkins