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Meet Ben: 2020 Family Advocacy Week Champion

Ben is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Ben and his family will share information about his health journey, Blank Children’s Hospital’s role in providing Ben with necessary health care services, and why the public and our elected officials must invest in the future of kids like Ben.

Ben wasn’t achieving his motor skill milestones by the age of 3, and he tired easily and couldn’t keep up with other kids his age.

He was diagnosed with Duchenne muscular dystrophy, a genetic disorder characterized by progressive muscle degeneration and weakness.

“Initially, our family was overwhelmed by Ben's diagnosis, but we have found refuge in connecting with parent support groups, Duchenne's awareness and fundraising events, and emerging medical research trials on Duchenne's,” says Jennifer, Ben’s mother.

The diagnosis brought in numerous other pediatric specialists including neurology, pulmonology, cardiology, physical therapy, mental health, and out of town travel for other pediatric specialty care.

His care is coordinated through Blank Children’s Hospital in Des Moines, Iowa, and UIHC Stead Family Children’s Hospital.

“This has been amazingly helpful to navigate the services and resources that are available to help Ben be as healthy as he can be, for as long as possible,” says Jennifer. “The knowledge and support Ben's health care team provides to Ben and our entire family makes a huge difference in our ability to handle the highs and lows.”

Today, Ben is doing well. The pandemic has caused a few delays in Ben's pediatric therapy appointments resulting in a noticeable tightening of his muscles. Now 7 years old, he has a great sense of humor and keeps everyone laughing. Ben also likes playing with Legos and biking.

“It is so important to ensure we have continued investments in pediatric research and incentivizing potential future scientists to pursue pediatric research,” says Jennifer.


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