Lincoln DeLuna turned 5 this month, outliving expectations.
His parents threw a big birthday party around his bed in the living room, with monkey and banana balloons.
Then they began a new, bureaucratic battle.
Now that Lincoln is 5, government insurance coverage switches from a program called MediKids to Healthy Kids. That means his parents' premium will increase by $72 a month. And they have to kick in co-pays for therapists' home visits -- another $640 a month. Even worse, instead of funding round-the-clock nursing at their Lutz home, the new program only allows 16 hours a day. And they have to pay for part of that.
"We're looking at a total increase of about $1,500 a month to get fewer services," said Lincoln's dad, Anthony DeLuna. "We both work full-time from home, trying to contribute what we can. But we just can't afford that."
Because Lincoln's disease is so rare, it's not included on Florida's list of illnesses that qualify for Medicaid waivers. If he had cerebral palsy or spina bifida, his parents wouldn't have to pay those costs. Federal funds help support the program, but each state decides what diseases to cover. "Florida needs to add orphan diseases to its waiver," Anthony said.
Lincoln was born with X-linked myotubular myopathy, a terminal, hereditary condition that makes his muscles extremely weak. His brain is fine, but he can't sit up, swallow or breathe on his own. Only one in 50,000 boys has the condition; most die before they turn 2.
He had been enrolled in a clinical trial at the University of Florida, where scientists planned to replace his defective gene, and he had gotten three different dates for the treatment. But doctors concluded his liver was too damaged to proceed.
Over the last week, the Tampa Bay Times chronicled Lincoln's journey. Our website includes a 40-minute documentary video.
Thousands of people read Lincoln's Shot and reached out to his family -- including Gus Bilirakis, R-Palm Harbor.
The congressman asked how he could help. Days later, Maggie and Anthony took Lincoln to meet him at a gathering of the Pasco County state legislative delegation. "Please," Anthony pleaded with the panel, "do not issue my son a death sentence by making it impossible for my family to support him."
Lincoln, who was wearing his American flag T-shirt, reached up from his wheelchair to hand the congressman a card.
"I want to work with you," Bilirakis said.
Another boy, a 3-year-old from Wesley Chapel, is in the same situation, the congressman said. He has Duchenne muscular dystrophy, a degenerative terminal illness, which also is not on that exemption list. No one knows how many other medically fragile children have fallen through the loophole.
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"We've been trying to knock on every door we can think of to help. I made 20 calls just today," Bilirakis aide Summer Robertson said Thursday. "The congressman called the CEO of Healthy Kids, but she said there really isn't anything she can do. The Florida Department of Health is looking into it. But it might take a legislative act to change the coverage, and that will take time."
Lincoln's insurance shifts to the new plan Jan. 1.
And he has a host of other needs his parents can't afford: A bigger stroller, $2,000; a whole-house generator to run his ventilator when the power goes out, $3,000, plus installation; a conversion van that can accomodate his wheelchair, so he doesn't have to lie on the car floor, $50,000.
Maggie said, "I just don't know what we're going to do."
To support Lincoln's medical fund, go to https://bit.ly/2PwGuZy.
Read all eight chapters of Lincoln's Shot.
Staff writer C.T. Bowen contributed to this story.
Contact Lane DeGregory at firstname.lastname@example.org. Follow @LaneDeGregory.