St. Joseph’s Children’s Hospital Patient With Extremely Rare Condition Heads to Capitol Hill

In June, 6-year-old Lakota Lockhart will join dozens of other pediatric patients from across the United States on Capitol Hill to speak out on behalf of kids with complex medical conditions and encourage Congress to support legislation that keeps children’s health care needs top of mind.

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.

His family is traveling to Washington D.C. as part of the Children’s Hospital Association’s annual Family Advocacy Day. The June 20-22 trip includes one-on-one meetings with U.S. Representatives Gus Bilirakis, Kathy Castor, David Jolly, Dennis Ross, Daniel Webster and Senator Bill Nelson; a tour of Washington D.C.; and a celebratory dinner to honor the children and their families.

The Lockharts will share with lawmakers their experiences with having a child with special health care needs, including the importance of having a medical home for children with complex and chronic conditions and their coverage through Florida’s Children’s Medical Services program. Together, St. Joseph’s Children’s Hospital and the family will ask Congress to support legislation that designates national pediatric networks that will ensure kids like Lakota receive life-saving care, regardless of where they live.

“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 where he underwent multiple surgeries to insert a feeding tube in his stomach and a breathing tube in his trachea, and today he’s cared for by a team of specialists in their Chronic-Complex Clinic.”

St. Joseph’s Children’s Hospital’s Chronic-Complex Clinic has been recognized nationally for its innovative work with medically complex children. Serving as a medical home for patients like Lakota, the specialized clinic provides consistent, accessible and coordinated primary care, resulting in healthier, happier and higher qualities of life for hundreds of children throughout Florida.

For more information about Family Advocacy Day, or to meet Lakota and his family, please contact Amy Gall at (813) 870-4731.