LUTZ, Fla. — For three hours, people paraded in with presents. They lined up in Lincoln DeLuna’s living room, around his hospital bed, waiting their turn to congratulate him.
He could hear them all, but since he can’t turn his head, they had to bend close for him to see.
“Happy birthday, Lincoln!” said a young woman, his aunt’s friend.
“I’ve missed you, Lincoln! Look how big you’ve grown!” cooed an elderly woman who knew his great-grandmother.
“These are for you,” said the speech therapist who has been helping him since birth. “Here, let me help you unwrap them.”
On his back, propped up with pillows, Lincoln mouthed, “Thank you.”
A shiny balloon bobbed above the ventilator by his left shoulder. At his right side, on a shelf above the IV pole, a pink binder was labeled, “Grade 2.”
He wasn’t expected to make it this long.
Cards and gifts blanketed his bed: A baby Yoda doll, an easel with markers, the GoPro he had been begging for so he can start a YouTube channel, “Lincoln’s Vlog.”
“How you feeling? You need anything?” asked his nurse. Lincoln mouthed, “No.” So the next guest leaned in.
Most of the people who came Saturday were his parents’ friends.
But that afternoon, Lincoln’s parents had promised to take him to the bowling alley to meet three friends. His own friends. He had never had friends.
“I’m so excited!” he mouthed, slightly waving both hands. “My first real party!”
‘It would have killed him’
When Lincoln’s mom was pregnant, doctors advised her to have an abortion. When he was born, some told her to let him die.
He had inherited a genetic disorder that affects only one in 50,000 boys.
The condition used to be called floppy baby syndrome. The disease, X-linked myotubular myopathy, prevents Lincoln’s body from producing a protein that makes his muscles move normally. He can’t breathe, swallow, sit up or talk. Tubes snake from his throat and stomach, connecting him to machines. He needs constant care, someone to suction his saliva so he doesn’t choke.
He was expected to die before he turned 2.
Last week, when Lincoln turned 8, his mom collapsed, sobbing. His parents had never thought they’d have their only child with them this long. But to them, the milestone also signaled that time might be running out. How much longer can they keep him alive?
In 2018, the Tampa Bay Times published an eight-part series, Lincoln’s Shot, and produced a documentary about his journey through a clinical trial that they had hoped might cure him. His parents had spent his whole life trying to keep him healthy 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 regret how much time we put into pursuing that drug,” his mom, Maggie Hoyle-Germann, 33, said recently. “I don’t think we’ll ever go through trials again.”
In the trial, 24 boys under age 7 received the gene therapy. Some started breathing on their own, holding up their heads, talking, even walking. Maggie tried not to go on Facebook because it was so hard seeing all of their progress.
Then she started seeing some of the boys turn yellow as their livers failed, their families pleading for transplants.
In the last three years, four of the boys who got the dose died.
If Lincoln had gotten the shot, his parents are sure it would have killed him.
“We feel horrifyingly lucky that he never got it,” Maggie said. “It was very traumatic to witness that as a bystander. I can’t even imagine being those parents.”
The federal government halted the trial. The owner of Audentes, the company that made the gene therapy, sold his laboratories. The San Francisco-based business is now run by Astellas, whose website promises it’s still committed to getting a treatment approved.
Now, instead of holing up waiting for a miracle, Lincoln’s parents are taking him out and showing him the world.
“OK, bub, you ready?” asked Lincoln’s dad, Anthony DeLuna, 32. Lincoln held up his right thumb. “All right, you need a diaper change? Let’s do that before I get your chair.”
While Anthony got wipes, Maggie threaded a tube into Lincoln’s stomach and pumped the gas out so it wouldn’t hurt when he sat. She poured formula into the feeding bag, then rubbed ointment into his eyes, since he can’t blink. She put balm on his lips since he can’t lick them. Together, his parents raised him slightly and slid a plastic brace beneath his back. His “Iron Man suit” stretches from his chest to pelvis and helps him stay upright.
“Do you want your new shirt?” Maggie asked. He was wearing a plaid button-up like Anthony’s. But someone had sent him a T-shirt she thought symbolized his story. “8 Years,” big letters said. Around that, the time was broken down: “96 months, 2922 days, 70128 hours, 4207680 minutes, 252460800 seconds of being awesome.”
Lincoln mouthed, “I want to match Daddy.”
He has a speaking board with buttons he can press to make sentences. He knows how to sign hundreds of words. But lately, he has so much to say, he prefers to mouth them. His parents and grandmothers can decipher most of his sentences. But nurses and visitors struggle to understand him, so his parents translate. “Let’s go!” he mouthed.
So Maggie suctioned his mouth while Anthony readied to lift him: “One, two, three.”
Lincoln weighs 85 pounds now. Maggie can’t carry him anymore. They need a $14,000 ceiling hoist with a sling. Two years ago, they got a Medicaid waiver that was supposed to give them $30,000 for medical supplies. But they still haven’t gotten the money. “Every time Anthony picks him up to put him in his chair or the bathtub, I say a prayer,” Maggie said. “I don’t know what we’d do if he throws out his back.”
They take Lincoln out every week, to the dog park to see their two doodles romp, to Target so he can pick out stickers, to Tampa’s Riverwalk, where he enjoys watching all the people.
He can be upright for a couple of hours before his body starts hurting.
“He’s making great strides with physical therapy,” Maggie said. “And he’s doing really well with school, especially math.”
Maggie and Anthony both work from home, for Humana. Medicaid covers round-the-clock nursing care, but staffing shortages often mean one of them has to take a shift. Three days a week, one of Lincoln’s grandmothers comes to help with his online classes. He’s learning to read and do algebra.
But he doesn’t interact with a virtual teacher. And there aren’t any classmates.
“Socialization has been the hardest part,” Maggie said. “How do we help him make friends virtually? And in COVID?”
As Anthony lowered Lincoln into his wheelchair, Maggie tucked pillows around him, then adjusted the clamps that hold his head. Anthony attached the portable ventilator to his trach tube. “OK,” he said. “Are we good?”
They were almost to the door when Maggie turned back to get AirPods. Lincoln had never been anywhere with flashing lights and loud music, and she worried the bowling alley might be overstimulating. She and Anthony had debated whether to have a party, but Lincoln kept begging. He wanted to invite his new friends.
The hard questions
He hasn’t been in the hospital in two years. He gets ultrasounds to check his liver every six months but no longer sees specialists or goes to the clinic in Gainesville. “We’re just trying to keep him stable,” Maggie said.
They’re hoping to get him a new motorized wheelchair in January, one he might be able to drive himself. He’s yearning for any bit of independence.
In some ways, his parents said, it was easier when Lincoln didn’t know what he was missing. When he was isolated in the living room, only interacting with family and nurses. When he didn’t know how sick he was – or what he couldn’t do.
But now that he has an iPad, now that he watches YouTube, he wants to sing like Ed Sheeran and dance like Taylor Swift.
“He’s started asking the hard questions,” Maggie said. “Will I be able to stand when I’m 11? Will I be able to walk when I’m 20?” Sometimes, she has to turn away so he doesn’t see her tears.
Maggie doesn’t want to lie to her son. But it breaks her heart to tell him the truth. The oldest boy she knew with his condition died last month, at 22. She asked her rabbi what to say. “Tell him what you hope,” the rabbi told her. “Leave the door open.”
“I have to force myself to choose not to be weighed down by the gravity of grief, and all we’re missing,” Maggie said. “There’s no time to go into that black hole about the meaning of life.”
Over the summer, Maggie posted a note on Nextdoor. Did any teenagers nearby want to come spend time with Lincoln, like a babysitter, only his parents would be there?
Lexi Singleton, 16, jumped at the chance. She started showing Lincoln videos of skateboarders shredding in the streets, bringing Lincoln tiny Tech Deck boards he can roll with his fingers. “I want a real skateboard,” Lincoln told her, “for my birthday.”
He invited her to his party. The other two guests were kids from the synagogue: an 8-year-old boy who had come over for a playdate and a girl, 6, who he often interacts with on FaceTime. Lincoln loves listening to her chatter about her day, her family, what she did in school. Lincoln told his parents, “She’s my best friend in the whole world.”
‘Here we go!’
Even in the parking lot, the music was deafening, dance hits booming from speakers above the glass doors. Maggie asked Lincoln if he needed the AirPods but he shook her off. He wanted to go inside.
The Main Event just opened in Wesley Chapel, near their home, and Maggie had checked it out ahead of time. Part bowling alley, part arcade, it had ramps to roll the balls down, so all Lincoln had to do was push. There were plenty of games he could play with big buttons. Even if he just watched the other kids, she knew it would be an adventure.
As Anthony wheeled him through the doors, Maggie ran ahead, then turned back to watch his face. “Your first birthday party!” she said. “Here we go!”
A two-story Christmas tree towered over the entry. Neon lights spilled from the ceiling. Games where you could ride a motorcycle, shoot ghosts, whack Minions, jangled in every corner.
They had just rolled past the snack bar when a girl in a white tutu skipped over and put her hand on Lincoln’s. “We’ve been waiting for you!” she squealed. “Everyone wants to say happy birthday!”
All four of his grandparents were there. His great-grandmother, too. His favorite nurse showed up to surprise him. “Come on,” called the girl, Sylvia Massman, 6, “It’s so fun!”
Anthony parked Lincoln at the end of a lane and pulled a metal ramp beside him. His grandmother set a green ball on top. “Look, it says eight,” she showed him. “Same as you!”
She tried to help him fit his fingers into the holes, but Lincoln patted the ball instead, then pushed it, slightly, just enough to get it rolling. It bounced off the bumpers and knocked down eight pins. “Hooray! You did it!” Maggie shouted, bouncing on her toes.
Sylvia ran over and gave Lincoln a high-five. She wanted to use the ramp, too.
They bowled six frames in an hour. Every time a pin toppled, Maggie jumped and cheered. When Sylvia got a strike, she grabbed the girl’s hands and spun her in a circle, laughing.
“I never thought we’d be here,” she said, wiping her eyes.
She had wanted so much to help Lincoln experience things that other 8-year-olds enjoy. Finally, she was getting to be like other moms.
Lexi gave him a skateboard. His speech therapist gave him a tripod for his GoPro. When his grandmother handed him a mylar balloon on a stick, he gave it to Sylvia.
After the other kids ate pizza, after Sylvia helped Lincoln blow out a candle, after everyone else ate cake, Lincoln said his body hurt. He had been upright for almost two hours. He wanted to go home and lie down.
Anthony tipped back his wheelchair so he’d be horizontal. His grandmother mopped his brow with a napkin. Maggie suctioned his mouth.
While Lincoln rested, Anthony gave game cards to the other kids, who scampered off to the arcade. “It’s OK,” Lincoln’s aunt told him, rubbing his arm. “When you feel better, we’ll come back here and play games.”