‘I need help. Please.’ Five-year-old asks legislators to fund cost of keeping him alive

They loaded their van in the dark: blankets and diaper bag, formula and feeding tube, portable ventilator, suction machine, oxygen sensor.

Anthony DeLuna slid his son’s medical stroller behind the passenger seat. Maggie Hoyle-Germann packed the shirt their 5-year-old had picked out to wear to the Capitol.

At 3 a.m., they bent over Lincoln’s bed. “Good morning, sleepy head,” Anthony whispered. “Didn’t I tell you it would be super early?”

“It’s going to be a long drive,” Maggie said. “We’ve got important business to do.”

Anthony unplugged Lincoln’s breathing tube, and Maggie scooped the boy into her arms.

They didn’t really have to go to Tallahassee. The state representative had said he would introduce the bill and tell his colleagues why it mattered.

But Anthony and Maggie wanted the lawmakers to meet Lincoln.

So on Wednesday, they left Lutz to make the nearly five-hour drive. They’d never been to the state capital. Lincoln had never been so far from home.

“This is so amazing,” Anthony said, turning onto the highway. “We could legit change legislation that could help other rare disease families. I hope they call it Lincoln’s law.”

***

Lincoln DeLuna was born with a hereditary genetic disorder that affects only one in 50,000 boys. The disease, X-linked myotubular myopathy, prevents his body from producing a protein that makes his muscles move. He can’t breathe, swallow, sit up or lift his head. He needs constant care, someone to suction his saliva so he doesn’t choke.

But his mind is fine -- he communicates with modified sign language and is learning to read.

Most boys with the disorder die by their second birthdays. Lincoln’s parents are trying to keep him alive long enough to find a cure.

In December, the Tampa Bay Times published an eight-part series, Lincoln’s Shot, and produced a 40-minute documentary about his journey. When he turned 5 that month, his parents learned that he had aged out of full insurance coverage -- and they would have to pay an extra $1,500 per month for fewer services. The state would no longer pay for unlimited therapy or full-time nursing. Maggie and Anthony both work full-time, for Humana. Now, every day, one of them has to sit by Lincoln’s bed from 4 p.m. until midnight.

Because Lincoln’s condition is so rare, and because boys like him aren’t supposed to live this long, the disorder is not included on Florida’s list of illnesses (like cerebral palsy or Down syndrome) that qualify for Medicaid waivers. Federal funds help support the Healthy Kids program, but each state decides what diseases to cover.

When Janet Cruz read Lincoln’s story, the state senator from Tampa reached out to his parents and promised to help. State Rep. Adam Hattersley, from Hillsborough County, offered to take up his cause in the House. Their bills would modify the Medicaid waiver, adding, “or X-linked myotubular myopathy.”

Just four words.

***

Anthony pulled into the parking lot at 8:15 a.m. An aide directed them to a spot Hattersley had reserved. “Welcome! You made it just in time,” said Amy Bolick. “Your bill is first up in committee.”

But Maggie needed to change Lincoln’s diaper, suction his nose and mouth. Anthony had to check blood and oxygen levels, adjust the ventilator. And Lincoln wanted to put on his T-shirt with the American flag.

“Nice shirt, Buddy,” Bolick said. “Everyone is excited to see you.”

They rolled Lincoln in his stroller up a long ramp, through the metal detectors and into an elevator. As soon as the aide opened the double doors to the meeting room, Rep. Mel Ponder called everyone to order. “This committee, as you know, is to protect our state’s most vulnerable citizens: children, families and seniors. We have four bills to consider today.”

Maggie and Anthony hadn’t even sat down when the chairman looked at them and said: “We’re honored to have you here. Welcome to the Florida House.”

Hattersley explained that House Bill 869 might only affect two boys, but the help it would provide would be profound. Hattersley said, “I’ll let his mother speak to that.”

Maggie wheeled Lincoln to the front of the room, turned him to face the long table rimmed with 14 representatives. “Thank you for having us,” she said. “This is my son, Lincoln.”

She told them about his disorder and how brilliant he is. “He’s been able to make it this long because of the wonderful services the state of Florida has provided for us,” she said through tears. “It is my absolute mission to help keep him alive. If we can partner together to add his condition to the medical waiver list, you might just save his life.”

She stepped back, behind the stroller, ran her fingers through her son’s curls. “Real quick,” she told the committee. “Lincoln has something to say.”

Clamps held his head in place. The ventilator hummed. Maggie translated as Lincoln signed the sentences they had rehearsed: “I need physical therapy. I need speech therapy. I need nursing. I need help. Please.”

When the chairman called the roll, people in the audience were still sniffling. Some lawmakers wiped their eyes.

The bill passed without discussion. The vote was unanimous.

***

In the hall, Maggie hugged Hattersley. “This was the biggest step,” he told her. “I’m very encouraged.”

He reminded her, though, that the proposal still has to pass two more committees in the House and three in the Senate. Then both chambers have to approve it before it goes to the governor.

Maggie nodded. The day before, she had watched a YouTube video of the old Schoolhouse Rock, where a cartoon bill sits on the Capitol steps, singing about how he longs to become a law. “Can we meet the other committee chairs?” Maggie asked. “As long as we’re here, I want everyone to meet Lincoln.”

“That’s a good idea,” Hattersley said. “Let me see who I can track down.”

They pushed Lincoln on the elevator, into the atrium, down a long hall. Past photos of ancient orange growers, airboats and astronauts, men shucking oysters, rolling cigars, harvesting tobacco. Because Lincoln has to be almost horizontal, and can’t turn his head, he only saw the ceiling.

The first stop was the office of Rep. MaryLynn Magar, who oversees the Health Care Appropriations subcommittee. “This is so important to us,” Maggie told her. “Other MTM families have told us to go to Georgia, where we’d get better services. But we don’t want to leave Florida.”

“We don’t want to lose you,” Magar said. “We’ll see how we can help.”

Back out by the elevator, Lincoln signed, “I want to lie down.”

“Can you hang on a little longer?” Anthony asked. “We have a few more people to meet.”

Senator Cruz shook Lincoln’s hand and told him, “This will probably go down in history as one of the most important bills I’ve ever sponsored.” He blew her a kiss.

The next stop was Sen. Gayle Harrell, chair of the Committee on Health Policy. They waited outside her office as groups of people walked by, lobbying for their own causes: pharmacists wearing white coats, cattlemen in cowboy hats, moms sporting shirts with photos of their sons who had been shot. Maggie leaned on Anthony’s shoulder, feeling alone.

“It’s so nice to meet you,” Harrell said brightly, when an aide finally ushered them in. “Thank you for coming to see me.” Anthony explained Lincoln’s disorder and what had happened to his medical care. “We need 24-hour nursing,” he said. “We need the services the state of Florida had been offering.”

The senator looked at Lincoln. When she spoke again, her tone changed. She wanted more details. “We need to look at this and at federal regulations.”

Maggie said she would email all the insurance information. Anthony said they had looked into every program, state and federal. Getting this waiver was their only option.

“Well, the waiver is specifically for developmental disabilities,” the senator said. “It only covers intellectual disorders.”

Maggie looked at Anthony, then stared at the senator. “So because he’s brilliant,” she said, “that’s a punishment?”

Harrell told Maggie to send those emails to her secretary. She said, “We’ll see what we can do.”

In the hall, Maggie clenched her fists. “Oooh,” she told Anthony. “I’m going to light her up.”

***

That afternoon, they stopped by Hattersley’s office again, to thank him. He gave Lincoln a poster with the state seal. He had signed it, “Thank you for coming and getting Lincoln’s bill through.”

Anthony beamed. “Hashtag, Lincoln’s law.”

Maggie told the representative about Harrell. She hadn’t expected anyone to be against the bill.

“It’s good to know that’s her stance. Now we have to find a path to combat that,” Hattersley said. “We’ll keep working on it. We’ll keep you guys posted. Thank you so much for coming all the way up here.”

Lincoln signed, “Thank you.” In the hall, he signed, “I want to go home.”

They stopped in the rotunda, to take a selfie, and were on their way out when Maggie saw a sign. “Is that the governor’s office?” she squealed. “Look, it is! I’m going to see if he’s here.”

While Lincoln signed again, “Go home,” Maggie hurried down the long hall lined with governors’ portraits. Anthony shook his head and told Lincoln, “Your mom is crazy.”

The governor was on his way to the airport, his secretary said. So Maggie asked for paper and a pen. “Governor DeSantis,” she wrote in loopy cursive. “We are currently trying to fight for Lincoln’s life … any support from you would be greatly appreciated and could help keep him alive to see a cure for his disease.”

For three years, Lincoln had been enrolled in a clinical trial to get a revolutionary dose of gene therapy.

Then, last fall, a doctor determined that Lincoln’s liver was too damaged to withstand the treatment. His liver is improving, Maggie said. She and Anthony hope to enroll him in a new trial as soon as there is one.

“Are you okay? Did you have fun?” Anthony asked Lincoln after loading everything into their van. Lincoln raised his right thumb slightly. Anthony smiled. “We got to see so many new things.”

“I’m so proud of you,” Maggie cooed, stroking Lincoln’s cheek. “I know how hard this was on your body.”

They all were exhausted. They had been up for 12 hours. On the long drive home, Maggie said: “Let’s call and see if we can get a nurse. We can just pay for it. I need a nap.”

But no one was available. So just before dark, after they unpacked everything, settled Lincoln into his bed and plugged in all his machines, Anthony told Maggie to go to sleep. He’d watch over Lincoln.

A nurse would be there at midnight.

Click here to support Lincoln DeLuna’s medical fund.