Last week, 15-year-old Lakota Lockhart and his mother, Krystal Lockhart, joined leaders from BayCare and St. Joseph’s Children’s Hospital on Capitol Hill to speak out on behalf of children with complex medical conditions and encourage Congress to safeguard vital health care coverage for kids. Caring for its community is part of BayCare’s DNA, and this trip is an extension of that commitment to improving the health of all it serves.
Lakota was born with congenital central hypoventilation syndrome, a central nervous system disorder which causes his breathing to stop every time he falls asleep. The condition is extremely rare, affecting less than 1,500 people throughout the world. He has undergone multiple surgeries including the insertion of a feeding tube in his stomach, a breathing tube in his trachea, a heart monitor implant as well as two tracheostomy reconstructions.
The Lockharts traveled to Washington D.C. as part of the Children’s Hospital Association’s annual Family Advocacy Day, along with BayCare Government Relations Director Jason Rodriguez, BayCare Government Relations Manager John Learn, St. Joseph’s Children’s Hospital President Sarah Naumowich and BayCare System Communications Strategist Amy Gall.
“It is critical that our elected officials hear directly from their constituents on issues that will directly impact them,” said Rodriguez. “Lakota’s and Krystal’s experience underscored the importance of ensuring access to high-quality care for children with complex medical needs and the need to strengthen Medicaid.”
The trip included meetings with U.S. Senators Ashley Moody and Rick Scott, as well as U.S. Representatives Vern Buchanan and Kathy Castor and staff from the offices of U.S. Representatives Gus Bilirakis, Scott Franklin and Darren Soto. During the meetings, the group asked Congress to be champions for legislation that would strengthen and protect Medicaid funding for children with complex medical conditions like Lakota.
“St. Joseph's Children's Hospital has been instrumental in my son’s survival,” said Lakota’s mother, Krystal Lockhart. “He spent the first 68 days of his life in their Neonatal ICU and today he’s cared for by a team of specialists in their
Chronic Complex Clinic. "We hope that sharing our experiences with having a child with complex medical needs will help policymakers recognize the importance of protecting and preserving vital health care coverage for all kids.”
Lakota is covered by Medicaid and participates in Florida’s Children’s Medical Services program. With a lifetime of specialized care in his future, this coverage is a critical lifeline to his family.
Family Advocacy Day brings together patients and parents from 60 children’s hospitals across the nation, urging lawmakers to protect children’s care, support the doctors and nurses who serve them and uphold the American value that every child deserves a healthy future.
