|Seminole Family Represents All Children’s Hospital in Washington, DC|
They had personal meetings with Representative C. W. "Bill" Young and Representative Kathy Castor. In addition, Nikki and Geno shared Marina's story with Emily Bouck, legislative aide to Senator Marco Rubio; Shane Lieberman, legislative director for Representative Vern Buchanan; and Melissa Gierach, legislative analyst for Representative Dennis Ross.
Their visit to Washington was part of the 2013 Children's Hospital Association (CHA) Family Advocacy Day and in conjunction with the organization's release of a special report documenting the growing population of medically complex children and existing barriers to coordinated care.
Marina was born with her internal organs protruding on the outside of her abdomen and protected only by a fragile membrane - an extreme case of a rare condition called giant omphalocele. Now a lively and beautiful child, Marina at one time lay perilously close to death in All Children's Neonatal Intensive Care Unit. Read her story in the December 2012 issue of Tender Loving Care.
The message families are sharing with Congress is that children like Marina depend on specialized pediatric care to manage their conditions. Nationally, 32 million children rely on Medicaid to access care. Currently, Medicaid is vulnerable to budget cuts at federal and state levels and not structured to coordinate care for the 2 million children with complex medical needs who rely on it for care.