One eleven-year-old girl is battling against a rare birth defect and for children’s insurance coverage.
Marina Marasco knows hospitals far better than any preteen should.
Marina Marasco says, “in my first surgery, I was less than an hour old.”
Marina was born with a rare birth defect that left all her internal organs protruding from her abdominal cavity and covered by a thin membrane.
It’s a condition known as a Giant Omphalocele.
Marina often has to teach others how to pronounce it.
Those people include U.S. Senator Marco Rubio of Florida.
Marina and her mom recently went to Washington D.C. fighting for Medicaid funding for children’s health, both for themselves and millions of others.
Marina’s 23 surgeries would have bankrupted her family without healthcare coverage.
Nikki Marasco, Marina’s mom says, “they estimated when she left the NICU, at $4 million. She was in the NICU for ten months. She came home on full life support.”
With still more surgeries to come, Marina and her family are now part of a group called, Speak Now For Kids.
It’s a grassroots effort to raise more funding for rare childhood conditions and for protecting Medicaid for all kids who need it.
They want to make it a national priority.
Nikki Marasco continues, “I hope to open people’s eyes.”
Marina knows her lobbying may not get the results she wants right away, but this determined young woman says she won’t stop until there are positive changes.
“It’s really worth it, ” continues Marina Marasco.
The group, Speak Now For Kids, has been active in supporting the Ace Kids Act that was just signed into law by the president.
It improves how care is delivered to kids with complex medical conditions on Medicaid.