It was a whirlwind visit to Washington DC for the Carlisle Family this week as Connor, his parents Kerry and Reid, and his big brother Reid Jr. advocated for All Children's Hospital and children's health care. Nine-year-old Connor Carlisle and his family shared their experiences with lawmakers and government officials as part of the 2011 Family Advocacy Day.
Connor's family has plenty of experiences to talk about. Connor spent his first eight weeks of life in All Children's Neonatal Intensive Care Unit where he had a tracheostomy tube placed, received a shunt to divert extra fluid from his brain, and had the first of several surgeries to expand his skull. He and his family have been coming ever since - seeing more than 16 All Children's specialists.
Congressman C.W. Bill Young (center) meets the Carlisle Family on Capitol Hill
Connor was born with a cloverleaf skull and an Arnold-Chiari type 1 malformation, a condition that can cause severe neurologic and cognitive defects. Connor has had 30 surgeries, most of them at All Children's Hospital, where he also continues his regimen of physical and speech therapy.
"The Carlisle Family was a great representative for All Children's Hospital. Florida congressional members were able to put a face on our issues and mission by talking with the family," said Gary Carnes, President and CEO of All Children's Hospital who joined the family during their Capitol Hill visits. "The advocacy of Kerry, Reid, Connor and Reid Jr. made a tremendous impression on those making decisions that impact all our patients every day. My personal thanks for their efforts on our behalf."
While in Washington, the Carlisles visited with Senator Bill Nelson, Representative Gus Bilirakis, Representative Kathy Castor, Representative C.W. Bill Young and aides with other Congressional offices. They told their personal story and discussed issues including Children's Hospital Graduate Medical Education (CHGME) and Medicaid funding.
Those who met the Carlisles also learned of Connor's love of riding bikes, STAR WARS, video games, and being a Cub Scout. Connor recently completed second grade at Shore Acres Elementary, where he is fully included in a regular classroom.
Family Advocacy Day is an annual event organized by the National Association of Children's Hospitals. The Carlisle family is the sixth family to participate on behalf of All Children's Hospital over the years.
