TAMPA, Fla. — 3-year-old Luke Calcines is about to take a trip.
He and his parents flew to Washington, D.C., to tell their story.
“He’s a little miracle boy,” said his father Gabriel.
Luke was born with a rare blood vessel issue inside his brain.
“He was in very critical condition. On life support for three days. So we needed to act with some high-risk surgeries,” said Gabriel.
“A lot of children do not make it through the surgeries or do not do as well as he did through them. So it was absolutely life or death,” said his mother Emily.
Months in the hospital and multiple surgeries lead to massive medical bills that totaled well over a million dollars.
Luke’s parents said thankfully, he was eligible for Medicaid through social security, which covered much of the costs.
But they said they are worried now for thousands of families that were recently dropped from Medicaid.
The Associated Pressreported 1.5 million people were removed from Medicaid in more than two dozen states.
RELATED: Almost 1M Floridians could be removed from state Medicaid program
But Florida had the most, with several hundred thousand people losing coverage.
Most got dropped for not filling out paperwork.
And some health care advocates said Florida isn’t taking advantage of a federal waiver that keeps children under six on Medicaid.
While the family is in D.C., they plan to meet with several members of Congress from our area, a rep from Senator Rick Scott’s office, and Senator Marco Rubio himself.
Luke and his parents are making the trip with Baycare’s Government Relations Director, Jason Rodriguez.
“They are telling his story. Lawmakers hear from us all the time. But it’s very important that they are here directly from the patients and their families on the issues they are dealing with day to day,” said Rodriguez.
Luke’s parents will stress to the politicians the importance of Medicaid coverage, better coordination between hospitals and states, and better access to specialists.
“A lot of times, kids lose Medicaid coverage, so for medically complex families, you absolutely need additional insurance in addition to just private insurance. Because private insurance is not going to cover what you need to cover,” said Emily.
Luke’s parents said their son has made incredible progress as he gets closer to his 4th birthday.
The hope is that he doesn’t need any more surgeries and continues to grow up happy and healthy.
