TAMPA, Fla. – Marina Marasco knows hospitals far better than any preteen should.
"In my first surgery, I was less than an hour old," Marina said.
Marina, 11, was born with giant omphalocele, a rare birth defect that left all her internal organs protruding from her abdominal cavity and covered by a thin membrane.
Marina and her mom recently went to Washington, D.C., to fight for Medicaid funding for children's health -- for themselves and millions of others. Marina's 23 surgeries would have bankrupted her family without health care coverage.
"They estimated when she left the NICU (neonatal intensive care unit), at $4 million. She was in the NICU for 10 months. She came home on full life support," said Nikki Marasco, Marina's mother.
With still more surgeries to come, Marina and her family are now part of a group, Speak Now for Kids. The group is a grassroots effort to raise more funding for rare childhood conditions and for protecting Medicaid for all kids who need it. The group wants to make their cause a national priority.
"I hope to open people's eyes," Nikki Marasco said.
Marina knows her lobbying may not get the results she wants right away, but this determined girl said she won't stop until there are positive changes.
"It's really worth it," Marina said.
Speak Now for Kids has been active in supporting the ACE Kids Act that was just signed into law by President Donald Trump. The law improves how care is delivered to kids with complex medical conditions on Medicaid.