St. Joseph's Children's Hospital Patient with Extremely Rare Condition Travels to Nation's Capital to Urge Congress to Safeguard Medicaid for Kids

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Jun 29, 2018, 06:40 ET

TAMPA, Fla., June 29, 2018 /PRNewswire-USNewswire/ -- This week, 5-year-old Lucia "Lucy" Ferlita joined nearly 50 other pediatric patients from across the nation 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.

Senator Marco Rubio discusses health care legislation for children with complex medical conditions with Lisa and Russell Ferlita (front row, right) and Dr. Daniel Plasencia, medical director of St. Joseph’s Children’s Hospital (back row, center). The Ferlitas' daughter, Lucy, was born with an extremely rare condition that has left her with low muscle tone and the need for a feeding tube to eat and a ventilator to breathe.

U.S. Rep. Kathy Castor (front row, left) meets with 5-year-old Lucy Ferlita, a patient at St. Joseph’s Children’s Hospital in Tampa; (back row from left) Amy Gall, communications coordinator with St. Joseph's Children's Hospital; Lisa and Russell Ferlita; Joni Higgins, manager of Federal Government Relations for BayCare; Dr. Daniel Plasencia, medical director of St. Joseph’s Children’s Hospital, to discuss health care legislation for medically complex children June 27, 2018.

Lucy is also the only person living in the United States with a diagnosis of EMARDD, or early onset myopathy with areflexia, respiratory distress and dysphagia, and is a patient at St. Joseph's Children's Hospital in Tampa, FL. Very little is known about this serious disease that has left her with low muscle tone and the need for a feeding tube to eat and a ventilator to breathe. She requires nursing care 24 hours a day, seven days a week.

Her family traveled to Washington D.C. as part of the Children's Hospital Association's annual Family Advocacy Day. The June 25-28 trip included meetings with U.S. Representatives Gus Bilirakis, Vern Buchanan, Kathy Castor, Charlie Crist, Dennis Ross, Darren Soto and Senators Bill Nelson and Marco Rubio. Lucy also had the chance to spend time with other medically complex children during a sightseeing tour of Washington D.C. and a celebratory dinner to honor the Family Advocacy Day participants.

"We participated in Family Advocacy Day because we want to be sure the specialty care and health care benefits we rely on are available to all families who need it," said Lucy's mother, Lisa Ferlita.

Together, St. Joseph's Children's Hospital and the family asked Congress to support legislation like the Advancing Care for Exceptional Kids Act (ACE Kids Act, H.R. 3325/S. 428) that ensures medically complex children have access to the specialized care they require not only to survive, but to thrive.

"Often, children with complex medical needs like Lucy do not neatly fit into existing health care categories which makes navigating the already complex state and federal systems even harder," said Ferlita. "We hope that sharing our experiences will help to improve the process and ease the burden faced by many parents who are now beginning their journey with their medically-complex child."

According to BayCare Federal Government Relations Manager Joni Higgins, this trip helps further outreach efforts to elected officials to underscore the critical impact that Medicaid has in helping ensure patients with medically complex conditions have access to the care they need.

"We are grateful for the time our Tampa Bay lawmakers spent with Lucy and her parents and are hopeful they will remember her story as they make decisions regarding health care policy in months and years to come," said Higgins.

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 15 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.

SOURCE St. Joseph's Children's Hospital