St. Joseph's Children's Hospital Patient Heads to Capitol Hill to Urge Congress to Safeguard Medicaid for Kids

June 21, 2018

TAMPA, Fla. (June 18, 2018) – Next week, 5-year-old Lucia “Lucy” Ferlita will join 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.

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. 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 is traveling to Washington D.C. as part of the Children’s Hospital Association’s annual Family Advocacy Day. The June 25-28 trip includes one-on-one meetings with U.S. Representatives Gus Bilirakis, Vern Buchanan, Kathy Castor, Charlie Crist, Dennis Ross, Darren Soto and Senator Bill Nelson; a tour of Washington D.C.; and a celebratory dinner to honor the children and their families.

“We’re participating in Family Advocacy Day because we want to be sure the specialty care and health care benefits we rely on is available to all families who need it,” said Lucy’s mother, Lisa Ferlita. 

Together, St. Joseph’s Children’s Hospital and the family will ask 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 Lucy’s mother, Lisa 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.”