Kids, parents advocate for pediatric health care in D.C.

WASHINGTON (Gray DC) - For most families, a trip to Washington is a chance to see the nation’s landmarks. For Eric and Virona Guy, and their 12-year-old son E’Shon, it was an opportunity to tell lawmakers how access to specialized pediatric care changed their lives.

E’Shon was born with a severe form or sickle cell anemia, a genetic blood disorder that required extensive medical treatment from an early age.

“It was a process, it was years,” said E’Shon’s father, Eric. “Once every three weeks, on Monday we’d go give blood, on Wednesday we’d have a blood exchange.”

The family sought treatment through University of Michigan Health C.S. Mott Children’s Hospital.

At age 8, E’Shon underwent surgery at Mott’s campus in Ann Arbor to remove part of his spleen after recurring complications. Since then, his need for emergency medical care has dropped significantly.

“They have gone beyond to confirm and make sure he gets the accurate care,” said his mother, Virona. “I mean, even calling around from several different countries just to get their insight of opinion.”

This week, the family traveled from Michigan to the nation’s capital as part of the Children’s Hospital Association’s annual Family Advocacy Day to share E’shon’s story.

The event connects patients and parents directly with members of Congress to discuss of impact federal health care policies. Advocates focused on issues including access to health insurance and children’s health programs.

“I feel like they [lawmakers] believe we believe. This specialized healthcare is needed,” Eric said. “It’s not a waste of money, it’s what we need for our youth.”

After meeting with congressional offices, Virona said she also left encouraged by the conversations.

“It felt genuine, and it felt like they are going to take the steps that they need to make sure that these kids have a bright future when it comes to medical care,” she said.

The Guy family hopes their experience will help put a human face on policy debates and ensure children facing serious medical conditions continue to have access to the care they need.