URBANDALE, Iowa — Every August, the Iowa Pediatric Healthcare Collaborative brings together lawmakers and families who have children with disabilities.
One local family is advocating for policy change to save their son’s life.
“Parents of children with rare needs are the ones who care the most and so they’re usually the ones, either leading these efforts, or helping to motivate and energize it,” Family Advocate Jennifer Schwartz said.
The Schwartz Family, from Urbandale, is a family of five on a mission to advocate for their youngest family member Ben who has a disease called Duchenne Muscular Dystrophy.
“It’s terminal there’s no cure for it. It robs your body’s ability to have, you know, to have mobility and to walk around between eight and 12, and eventually affect your lungs and your heart. And so that’s early 20s that it’s done,” Family Advocate Brian Schwartz said.
That’s tough, especially for a seven-year-old who loves Cyclone football Victory Day.
“He gets to run a touchdown and the band’s there in the spirit squads there and they’re all cheering he gets up on the big screen,” Brain Schwartz said.
But will most likely never be able to play when he’s older.
So, for now, the Schwartz’ are playing the field and running with every opportunity they get to advocate for their son by personally talking to policy makers and this year it’s all virtual.
“We talked about Medicaid. We talked about this collaborative health care, which is, you know Mercy One, UnityPoint Blank Children’s Hospital, Child Serve all of them were on that call and we utilize all of those services, and it’s a really good collaborative approach, and without it, we don’t get the quality of coverage that we would have gotten otherwise.
UnityPoint said when families communicate with congress people and senators, they are putting a face to a disease that needs funding.
“It really makes honestly my job easier in creating policy change when we have families that are willing to step up and be courageous and share their story,” Blank Children’s Hospital Director of Government Relations and Family Services Cheney Yeast said.
Since their son’s disease does not have a cure, the Schwartz’ are big advocates for funding medical research, making sure it’s done right and doesn’t get slowed down.