Fourteen-year-old Trevor Conklin has spent a lot of time at Levine Children’s Hospital. He has endured more than 20 surgeries and multiple hospitalizations to help manage his spina bifida, a birth defect that prevents the closing of his backbone and membranes around the spinal cord. But despite any setbacks, Trevor and his family recently embraced the chance to stand up for other children and families and the places that help provide them the care they need.
The Conklins -- Trevor, sister Melanie, and their parents, Dave and Melissa -- traveled to Washington D.C., last month to take part in the Speak Now for Kids Advocacy Day, a national gathering organized by the Children's Hospital Association representing 38 children's hospitals across the country. The family, along with more than 40 other families, had the opportunity to meet other family advocates from across the country and steal a few moments with their congressional representatives, Republicans U.S. Rep. Robert Pittenger (R-9th District) and U.S. Sen. Thom Tillis (R-N.C.), reminding them of the importance and needs of pediatric healthcare.
Levine Children's Hospital has become a home-away-from-home for Trevor and his family. In fact, the Conklin kids are founding members of the Teen Advisory Council at the hospitalland Dave and Melissa are part of the Family Advisory Council.
When Mike Daly, the family-centered care coordinator at Levine Children’s Hospital, asked Trevor and his family if they would like to be part of this year’s event, they jumped at the opportunity. “We wanted to go to DC to try and make a difference,” Dave said. “My wife Melissa and I have always taught the kids to stand up for what they believe in. We enjoy being part of the solution.”
The event kicked off with local radio interviews, a sightseeing bus tour of the city, lunch at the hotel and a fun, interactive briefing to prepare families for their legislative visits the next day. That evening, all attendees participated in a patriotic-themed dinner celebration, including live music and other family-friendly entertainment.
During the meetings with Pittenger and Tillis, the family shared their story and how complex pediatric care can be. They discussed how they utilize Medicaid and how some of the possible enhancements of the program could greatly affect them and many other families across the Carolinas and the country.
“The message we would like to share is to stand up for something,” said Dave Conklin. “Everyone cares about something. Very few people will ever get to walk the halls of Congress and meet with their representatives about something that is near and dear to them, but many people can attend to other simpler yet effective things. “
