Ryan’s Story

The Vaishs have endured everything from blizzards to exploding plane engines to travel several times a month from Los Angeles to Nationwide Children’s Hospital in Columbus, Ohio. The motivation: their loving and spirited 12 year-old son Ryan, and finding a way to slow down the devastating muscle-wasting disease that threatens his life.

“I kind of went crazy, hearing the diagnosis,” recalls Ryan’s mother, Ana. “We had never heard of Duchenne’s. When we learned about how the disease progressed, it was unimaginable that our sweet, happy-go lucky son could go through this. We were devastated.” Affecting mostly boys, the disease slowly destroys muscle fibers in every part of the body, including the heart. DMD eventually steals a child’s ability to walk, run and breathe. Twenty years ago, most children with DMD would die of heart failure in their teens or early twenties.

That changed when Dr. Jerry Mendell of Nationwide Children’s Hospital, working with other clinician scientists, proved that steroid therapy could significantly slow the disease’s progression. The treatment ultimately became the standard of care worldwide, extending the lives of thousands of children. It was the same protocol that Ryan started on shortly after his diagnosis.

Three years into the trial, Ryan is still walking, playing video games, horsing around with the dog and arguing with his little sister – a typical 12-year-old living with a very atypical disease. “His condition is stable now, but I think that Ryan probably would be completely confined to a wheelchair if we hadn’t started coming to Nationwide Children’s when we did,” says Ana. “I tell Ryan that his body may be weak, but that his brain is very strong, very sharp. He knows that he has played a part in something that will hopefully, one day, help so many other boys.”

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The Vaishs have endured everything from blizzards to exploding plane engines to travel several times a month from Los Angeles to Nationwide Children’s Hospital in Columbus, Ohio. The motivation: their loving and spirited 12 year-old son Ryan, and finding a way to slow down the devastating muscle-wasting disease that threatens his life.

“I kind of went crazy, hearing the diagnosis,” recalls Ryan’s mother, Ana. “We had never heard of Duchenne’s. When we learned about how the disease progressed, it was unimaginable that our sweet, happy-go lucky son could go through this. We were devastated.” Affecting mostly boys, the disease slowly destroys muscle fibers in every part of the body, including the heart. DMD eventually steals a child’s ability to walk, run and breathe. Twenty years ago, most children with DMD would die of heart failure in their teens or early twenties.

That changed when Dr. Jerry Mendell of Nationwide Children’s Hospital, working with other clinician scientists, proved that steroid therapy could significantly slow the disease’s progression. The treatment ultimately became the standard of care worldwide, extending the lives of thousands of children. It was the same protocol that Ryan started on shortly after his diagnosis.

Three years into the trial, Ryan is still walking, playing video games, horsing around with the dog and arguing with his little sister – a typical 12-year-old living with a very atypical disease. “His condition is stable now, but I think that Ryan probably would be completely confined to a wheelchair if we hadn’t started coming to Nationwide Children’s when we did,” says Ana. “I tell Ryan that his body may be weak, but that his brain is very strong, very sharp. He knows that he has played a part in something that will hopefully, one day, help so many other boys.”

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