St. Joseph's Children's Hospital Patient Spends Time on Capitol Hill to Support Legislation for Medically Complex Children

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 traveled to Washington D.C. as part of the Children's Hospital Association's annual Family Advocacy Day. The June 20-22 trip included one-on-one meetings with U.S. Representatives Gus Bilirakis, Vern Buchanan, David Jolly, Dennis Ross, Daniel Webster and Senator Bill Nelson; a tour of Washington D.C. and the White House; and a celebratory dinner to honor the children and their families.

The Lockharts shared 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 asked Congress to support legislation that designates national pediatric networks that will ensure kids like Lakota receive life-saving care, regardless of where they live.

"Direct patient advocacy is the most effective form of convincing lawmakers to pass legislation or make change," said Keri Eisenbeis, director of Government Relations for BayCare. "Lakota and his family went to great lengths to tell their story in a way that no one else can."

"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.

To see photos from the family's trip to Capitol Hill, visit facebook.com/stjosephschildrens.

About St. Joseph's Children's Hospital
As Tampa's only dedicated children's hospital, St. Joseph's Children's Hospital is committed to providing everything needed for the health and well-being of children. Part of the BayCare Health System, St. Joseph's Children's Hospital provides more acute medical and surgical pediatric care than all other hospitals in Hillsborough County. From the tiniest baby to the high school quarterback, patients are cared for by doctors who specialize in treating children, in surroundings designed exclusively for kids.

About BayCare Health System
BayCare is a leading not-for-profit health care system that connects individuals and families to a wide range of services at 14 hospitals and hundreds of other convenient locations throughout the Tampa Bay and central Florida regions. Inpatient and outpatient services include acute care, primary care, imaging, laboratory, behavioral health, home care, and wellness. Our mission is to improve the health of all we serve through community-owned, health care services that set the standard for high-quality, compassionate care. For more information, visit www.baycare.org.

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SOURCE St. Joseph's Children's Hospital

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