Around a hundred families from across the country are making their way to our nation’s capital this week. Their mission is to talk to lawmakers about how critical it is to fund research about illnesses affecting children.
The Clayton’s from Fredericksburg, Va. are one of the families participating in the Children’s Hospital Association’s Family Advocacy Day. Michelle and Paul Clayton noticed something was wrong when their middle child, Austin, 12, was falling down a few years ago and couldn’t catch himself.
“A ten-year-old active boy that was attending sports camps the summer before and, you know, to find out it was kind of blindsiding,” Michelle Clayton said, brushing away tears.
Doctors told the Clayton’s that Austin has Muscular Dystrophy.
“The muscle breaks down because a protein is missing,” Austin explained. “The most active you are the more muscle breaks down.”
The Clayton’s are in and out of the Children’s Hospital of Richmond at VCU about once a month now. They go to physical and occupational therapy every other week.
“A lot of kids are in a wheelchair because they either can’t walk or they want to preserve their muscles so they can walk,” Austin said.
Austin is also now in a wheelchair, but that doesn’t put on the brakes from being a kid. Michelle Clayton says her son is known as a jokester and sometimes gets “speeding tickets” from teachers for going too fast down the hallway. The kid also knows how to pop a ‘sick’ wheelie, like a skateboard but with his chair.
But this week, Austin is doing something grown up. He and his family drove to Washington, D.C. to talk with lawmakers about the role pediatric medicine and research plays in their lives. There are two researchers are at the Children’s Hospital of Richmond at VCU specifically working on projects about the type of Muscular Dystrophy Austin has.
For Michelle Clayton, it’s not just about telling elected officials about Muscular Dystrophy. There are many children who need support from doctors and lawmakers, she says.
“A lot of children with special needs need to see a lot of specialists, and I think the support for those children and the providers who are treating them is very important,” she explained, “and to let them know that the funding and support and Medicaid is really important for those children to be able to receive the healthcare they need.”
Capitol Bureau Reporter Sara McCloskey spoke with Austin a few hours before he and his family left for the Capital.
“I am kind of nervous. This is my first time so I don’t know what it’s going to be like,” Austin said. “But I am excited just to talk to them.”
With the love and support from his family, Austin knows he can be a voice for other kids like him.
“I always told him that he was going to do great things. And even with the diagnosis, he always has a smile on his face,” Michelle Clayton said.
The Claytons and the rest of the families will be in Washington through Wednesday.
Officials with the Children’s Hospital of Richmond at VCU, which is part of the Children’s Hospital Association, say they are still finalizing the schedule for which lawmakers they will be visiting with. So far, Austin is expected to meet Rep. Don McEachin.
As for the rest of summer break, Austin is aiming to play pitcher on a baseball team.