A 5-year-old little girl from Tampa is taking on Congress today in Washington D.C.
Lucia “Lucy” Ferlita has a rare, debilitating disease and is fighting for children’s Medicaid. She’ll be meeting with members of Congress along with 50 other pediatric patients from across the nation.
Her parents describe her as bright, hilarious and someone who loves to people watch.
She has the rare disease called EMARDD. Only 16 people in the world are diagnosed and she’s the only living person in the United States with it.
Lucy has to speak with an iPad because she is on a ventilator from her disease. Very little is known about her disease. She has low muscle tone and needs a feeding tube to eat.
Lucy goes to three different kinds of therapies twice a week and requires 24-hour, round-the-clock nursing care.
Today, Lucy and other patients are meeting with Congress to support legislation that keeps children’s health care needs top of mind for her and other patients like her who have complex medical needs and do not fit into existing health care categories.
“For families that don’t have time, or there are single mothers out there with children like this, they need opportunities or easier ways to get Medicaid so their families can thrive,” says Lucy’s mother, Lisa Ferlita.
The trip includes one-on-one meetings with Tampa Bay area members of Congress including Gus Bilirakis, Kathy Castor, Charlie Crist and Senator Bill Nelson.