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After losing hope for a cure, Lincoln DeLuna’s family is living for the moment

Tampa boy with genetic disease has put on weight and started kindergarten.
Anthony DeLuna and Maggie Hoyle-Germann help their son Lincoln, 5, cross the road to find ducks near their home in Lutz in late August. Lincoln has a rare genetic disease which makes it hard for him to move, and impossible to breathe without a ventilator. [JOHN PENDYGRAFT | Times]
Published Sep. 4
Updated Sep. 4

LUTZ — Lincoln wanted to see the ducks.

Not the fat ones in that video on his iPad. Or the cartoon ones in his book about farm animals. He wanted to visit the real ones waddling around the pond.

“I want to go driving,” Lincoln signed from his bed that afternoon in late August. “I want to go feed the ducks. Now.”

His parents, Maggie Hoyle-Germann and Anthony DeLuna, looked at each other and laughed. Lincoln can’t talk because he’s on a ventilator. But in the last eight months — ever since he turned 5 — he has become much more communicative. And demanding.

He has learned to sign 200 new words with his thin fingers. He figured out how to strum a ukulele to get their attention. He just started kindergarten with a teacher who comes to his home. He gained 10 pounds — and so much stamina.

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 normally. 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. He was expected to die before he turned 2.

In December, the Tampa Bay Times published an eight-part series, Lincoln’s Shot, and produced a documentary about his journey through a clinical trial that might have cured him. His parents had spent his whole life trying to keep him alive long enough to get that dose of gene therapy, sheltering him so he wouldn’t get sick, only leaving home to see doctors.

But after Lincoln’s liver showed signs of damage, doctors dropped him from the trial.

His parents had to abandon their hope that everything would change.

“I spent a long time grieving what might have been,” Maggie said. “But eventually, it became almost liberating, like you only get one life so you might as well live it.”

After the story ran, 100 strangers contributed more than $20,000 to the family’s medical fund. Lincoln’s parents were able to buy a generator, to keep his machines running when the power goes out and save them from racing to the hospital each time. They bought him a customized wheelchair so he can sit up — sometimes for an hour a day. A Tampa couple also donated a handicapped-accessible van. Instead of lying on the floor of their old minivan, Lincoln can ride in his new wheelchair and look out the windows.

Now, instead of hoping for tomorrow, Lincoln’s parents are living for today.

“We’re basically taking the chains off,” Anthony said. “Since we don’t have to keep him safe for that clinical trial, we can focus on him not missing out on anything else.”

They drive Lincoln to the discount store Five Below so he can pick out stickers. They wheel him through Walgreens to look at toys. On Friday nights, they often park his chair on the edge of the food court at Armature Works, so he can see all the people and their dogs.

But his favorite destination is right down the road.

“Now,” Lincoln signed again to his parents that August afternoon. “I want to go feed the ducks now. Can you hear me?”

Maggie kisses Lincoln as the family prepares to go feed ducks. [JOHN PENDYGRAFT | Times]

***

Maggie and Anthony both work full-time for Humana, from home. But for months, they battled over government insurance. Federal funds help support Florida’s Healthy Kids program, but each state decides what to cover.

Because Lincoln’s disease is so rare, it’s not included in Medicaid waivers for the Sunshine State. So when Lincoln turned 5 in December, he lost funding for round-the-clock nursing.

He stopped getting physical, speech and occupational therapy. And his parents had to take shifts sitting up with him all night.

In March, Maggie and Anthony took Lincoln to Tallahassee, trying to convince lawmakers to include his disorder in the waiver. But the bill died. They kept pushing.

Ultimately, a psychiatrist who evaluated Lincoln determined that, since he is non-verbal and on life support, he could qualify for coverage under the category “Other.”

He now has full-time nursing, and unlimited therapy, again.

“He’s getting so much more mobile,” Maggie said. “He’s even making up these little dance moves.”

RELATED: Listen to podcasts of reporters reading and discussing the series.

***

While the nurse suctioned Lincoln’s mouth, and Maggie wriggled her son into shorts, Anthony rolled the wheelchair to the side of the bed and set the brakes. He tipped back the seat, folded a thin blanket into it, loaded the portable ventilator below.

“All right, Lincoln,” he said. “Are you ready to go driving?”

Lincoln lifted his right thumb slightly. “Okay,” said Anthony, sliding his arms beneath his son’s slender back. “One, two and three.”

Carefully, he carried the boy to the wheelchair. He adjusted clamps around Lincoln’s head, slid out armrests to support his weak hands and strapped a plastic brace around his torso, to help him stay upright. “Good?” asked Anthony.

Lincoln mouthed, “Yes.”

“All right,” Anthony said. “Now the air.” He counted again, and on three, removed the ventilator from Lincoln’s throat, then quickly inserted the one from the portable machine. “You feel good? Anything hurt?” he asked.

Lincoln signed, “Get bread.”

“Do we even have bread?” Maggie asked.

“We have English muffins,” said Anthony.

“Do ducks eat English muffins?” Maggie asked.

Lincoln mouthed, “Yes.”

“Okay,” said Maggie, wheeling him into the kitchen. “Then come help me get the English muffins.”

"Do ducks eat English muffins?" Maggie asked. Lincoln was sure they did. [JOHN PENDYGRAFT | Times]

Maggie rolled Lincoln into the van, which Anthony calls Big Red. They strapped in his chair. Anthony raised the ramp. About a mile down the road, he pulled into a church parking lot, and they unloaded Lincoln.

“All right, the ducks are way down there,” Maggie said, pointing.

Lincoln followed her finger, then signed, “There he is!”

A fat black one, with a red bill, was wading along the shore. When it saw Lincoln, it sauntered over, expectant.

“Here he comes! He’s coming, see?” asked the nurse.

Maggie tore the English muffin into pieces and helped lift Lincoln’s arm so he could toss the bread into the grass. “Good job, baby! Good job!” she cooed. “See, he likes it! You were right!”

They were starting to turn back when Lincoln saw another duck — and a bunch of babies — on the other side of the street. He signed, “Feed the babies!”

So Maggie ran into the middle of the road and held out both arms, to stop traffic. Anthony pulled Lincoln’s wheelchair up a berm, pushed it across two lanes of asphalt, then lowered it to the sidewalk on the other side. “Oh my goodness!” Anthony said. “Look how many there are!”

Seven ducks, and an ibis, came toward Lincoln. Some had brown heads, some white. “A whole family!” Lincoln signed, then held out his hands for bread.

Anthony kept asking if he was hot, if bugs were biting him. Maggie kept asking if he was tired. Lincoln shook them off, smiling, tossing bite after bite to the birds.

For years, Lincoln saw the world mostly through his iPad and books. Now, instead of sheltering him, his parents are starting to take him on adventures. [JOHN PENDYGRAFT | Times]

***

The clinical trial went on without Lincoln.

The San Francisco bio-tech company that manufactures the gene therapy treated 12 boys, ages 9 months to 6 years. Matt Patterson, who founded Audentes, said the results have been “extremely encouraging.”

“Many of those boys are hitting standard milestones already, sitting unassisted, holding their heads up on their own,” Patterson said in late August.

Four of the boys are off ventilators. “They can make noise, cry, and, best of all,” Patterson said, “they can breathe.”

Over the next few months, his company will give the shot to four more boys. He hopes the Food and Drug Administration will approve the product by 2021.

Then, he said, individual doctors — and insurance companies — will decide who gets a dose.

If Lincoln’s liver has improved, and his doctor decides he could withstand the treatment, eventually he might be eligible, Patterson said.

It’s not clear what effect the treatment would have on a boy over 6.

Lincoln is no longer visiting the University of Florida clinic that was participating in the trial. But his liver has improved, Maggie said. He’s going to get another MRI on his liver this fall. He hasn’t been hospitalized in almost a year.

She’s not holding out much hope that he will someday get gene therapy. She has stopped checking Audentes’ website for updates.

On Facebook, she unfriended other moms whose sons have the same disorder.

She didn’t want to see the boys who had been dosed now crawling, or hear them say, “Mama.” And she can’t bear to read about those who have died.

Every once in a while, she logs onto a webpage for a French company called Dynacure. Scientists there are working on a different type of treatment for boys like Lincoln.

That might not come for another two years.

***

Lincoln was tired when they got back to the house. He had been strapped upright in his wheelchair for almost an hour.

But before his mom took off his brace, before his dad carried him to bed, before the nurse plugged the feeding tube back into his stomach, he wanted to dance.

His parents looked at each other and laughed. “Alexa!” said Maggie. “Play Taylor Swift’s Shake It Off.”

As soon as the music began, Lincoln started shaking his knees. Then he added his arms, slightly flapping his elbows. And his hands, shaking at the wrists, all timed to the beat.

He had watched his parents’ moves as they sang to him in the living room and had adapted them to what he was able to do.

Maggie got up from the couch and did the twist beside him. Anthony called, “Shoulder rolls!” Lincoln tried.

He knew all the lyrics and mouthed along:

“I keep cruising, can’t stop, won’t stop moving. It’s like I got this music in my mind, sayin’ gonna be alright.

“‘Cause the players gonna play, play, play, play, play. And the haters gonna hate, hate, hate, hate, hate.

“Baby, I’m just gonna shake, shake, shake, shake, shake. I shake it off. I shake it off.”

After Lincoln showed off his dance moves to a Taylor Swift song, his parents and nurse Courtney Collins started line-dancing around him in the living room. [JOHN PENDYGRAFT | Times]

Click here to support Lincoln DeLuna’s medical fund.

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