TAMPA, Fla. – A 5-year-old girl with the rare condition EMARDD is traveling from Tampa to the nation's Capital in support of children's Medicaid funding.
Lucia "Lucy" Ferlita is scheduled to meet with seven U.S. representatives and U.S. Sen. Bill Nelson while in Washington, D.C.
Ferlita has meetings with U.S. Reps. Gus Bilirakis, Vern Buchanan, Kathy Castor, Charlie Crist, Dennis Ross, Darren Soto and Daniel Webster.
Very little is known about EMARDD, which has left Ferlita with low muscle tone, the need for a feeding tube to eat and a ventilator to breathe.
Ferlita is the only person in the U.S. with a diagnosis of EMARDD.
EMARDD stands for early-onset myopathy with areflexia, respiratory distress and dysphagia.
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