Meet Ben: 2019 Family Advocacy Day Child Champion

Ben is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Ben will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Animated, spirited and creative are the words to describe this 6-year-old boy from Iowa. Like most kindergarteners, Ben is energetic and loud. But there is one thing that makes him different from other schoolmates his age—Ben’s muscles are quickly breaking down and will not restore themselves.

Ben was diagnosed with a rare disease called Duchenne muscular dystrophy (DMD) at age 3. As he’s growing older, he’s starting to physically fall behind his peers and easily become fatigued. Fortunately, the providers and staff at Blank Children's Hospital are an enormous support for him and his entire family.

Ben is excited to see Dr. Abosaida at every visit, and his siblings want to see the same doctor too—even though they don't need pediatric specialty care. Blank Children's Hospital makes the visits positive and fun for the entire family.

What Ben lacks in strength, he makes up for in spirit. He’s a big clown, but can also turn around and be laser-focused on any given task. Even though Ben doesn't fully understand his prognosis, he remains positive, sassy and spunky. Ben always gives his family hope that he has what it takes to fight this degenerative disease. Go, Ben!

Join us in welcoming Ben to 2019 Family Advocacy Day.

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