The life
This is Chapter 5 of the eight-part series Lincoln’s Shot. Click here for the other chapters.
In the parking lot of Quaker Steak & Lube restaurant, they bent into the back of their van, struggling to get their son out without disconnecting all his machines.
Lincoln DeLuna was 2½, and he had grown too big for his medical car seat. But his parents couldn’t afford the $1,500 for the next size, so they had propped his frail body between foam wedges and laid him on the floor.
That Saturday in May 2016, they were a half-hour late to his first fundraiser — a Bud Run organized by a group of bikers.
“What if this is too much for him?” Maggie Hoyle-Germann asked her husband, bending to untangle the tubes twisted around their son. “There are so many people here. Those bikes are so loud. And it’s so, so hot … ”
Lincoln was born with X-linked myotubular myopathy, a rare, terminal illness that makes it almost impossible for him to move. His parents seldom took him out of the house, but they had promised the children’s charity that had organized the event that they would make an appearance.
So they settled him into his stroller, adjusted clamps around his temples to hold up his head, tugged a teal ball cap over his dark curls and propped a new pair of sunglasses in front of his sleepy eyes.
Bikers from across Tampa Bay were crowded on the patio in Clearwater, drinking beer and waiting. On the covered stage by the bar, auction items were labeled: A football signed by former Buccaneers’ coach Jon Gruden, a guitar once played by Willie Nelson, wrestling boots that Hulk Hogan had scuffed up.
Maggie pushed Lincoln into the sea of people and asked, “You ready?” Slowly, he raised his right thumb.
As more than 100 people cheered, the emcee shouted into a microphone.
“Hey, everyone, here he is!”
Almost a year had gone by since Maggie and Anthony DeLuna had signed up their son to be part of a clinical trial that scientists said could save him.
There was still no word on when, or even if, testing would begin.
But they were looking toward a future they once couldn’t dream of.
They had hired specialists to help Lincoln develop his muscles and his mind.
They had ordered all the medical equipment insurance would cover: tubes, syringes, gloves, gauze, nebulizers and oxygen sensors.
There were still so many things that Lincoln needed, that they couldn’t afford.
Anthony’s mom, Ronda Clark, had been a Hillsborough deputy and was friends with many of the bikers. She hoped they could raise enough to buy the bigger car seat. Or maybe even $20,000, for an electric wheelchair Lincoln could learn to drive on his own.
“You want to wave to the people?” asked Ronda, who was rolling Lincoln around the Clearwater restaurant. “They all came to see you. Are you okay?”
Lincoln’s face flushed, then went white. An alarm went off on the portable ventilator.
While worried bikers looked on, Maggie suctioned his nose and mouth. Anthony adjusted the settings that controlled his breathing. Maggie’s sister, Katie, pulled ice packs from a cooler and lay them on Lincoln’s cheeks.
“Is that better?” she asked.
Lincoln didn’t respond. His hands lay limply at his sides. “We’ve got to get him back to the van,” Maggie said, scooping him into her arms. “He needs to cool down.”
They were still fanning Lincoln in their old Dodge Caravan when someone paid $300 for a Lightning jersey signed by Vinny LeCavalier and someone else bid $720 for Charlie Daniels’ fiddle.
Later, after Lincoln felt better, Maggie walked back toward the stage with him. She heard the emcee shout, “That’s $1,100 for George Strait’s guitar!”
She paused to catch her breath. Who were these strangers, paying so much to help her son?
At the end of the event, the bikers had raised more than $17,000. Maggie took the microphone and turned Lincoln to face the crowd. “You’ll never understand how much this will help get us through the dark, hard days.”
“He is full of life”
A few months later, on an October morning, Lincoln heard the front door open and started clapping. It was a Tuesday. He loved Tuesdays.
“Who’s here?” Maggie asked. “Who is it?”
Lincoln signed “friend.”
“That’s right,” said Maggie. “Which friend?”
Slowly, scrutinizing his thin fingers to make sure he got it right, Lincoln spelled “L-A-R-R-Y.”
Over the last year, a half-dozen physical therapists had come to work with Lincoln. Most were terrified to move him, afraid they might hurt him.
Larry Lester wasn’t worried. He had never known a boy with Lincoln’s disorder, but in his 20 years helping patients through the Florida Elks Children’s Therapy Services, he had treated myriad muscle diseases. He knew that, with myopathies, muscles don’t deteriorate like they do with dystrophies. “Your muscles are just asleep,” he told Lincoln and his parents. “It’s our job to wake them up.”
If Lincoln ever got gene therapy, whatever muscle he had would have to be strong enough to withstand rehab.
First, Larry massaged Lincoln’s sloped shoulders, working out kinks like a chiropractor, then tipped his chin side-to-side. The boy closed his eyes. “That feels better, doesn’t it?”
Next, Larry spread a paisley quilt on the floor and carefully lay Lincoln in the center. “Okay, let’s use your left hand to touch your right knee. You can do it!” said Larry. Instead of moving his hand, Lincoln tried to bend his knee. “Oh, you’re such a cheater!” The therapist smiled. “But good movement with that leg.”
“He has so much to say”
Larry worried that Lincoln was spending too much time on his back, causing his face and chest to flatten. All that pressure wasn’t good on his organs.
“Let’s try it on your side,” he said, rotating Lincoln back and forth. “Now, use your core and let me see you lift those hips.”
Maggie laughed, “Big booty pop!”
“Excellent work!” said the therapist. “You’re getting so much stronger. This is the best movement yet.”
“He really wasn’t moving much at all before,” Anthony said. “He seems so much happier, not being static.”
They tried putting Lincoln in his stander, but he was exhausted. He signed, “Help!” Then, “Nap.” By the time they plugged his machines back in, he had fallen asleep.
The sky was silver, the sun just beginning to slip, when Anthony pulled into Sunset Beach. Maggie got out, shading her eyes. Her sister bent over Lincoln in the backseat.
“Hello, super cutie! We’re doing this!” Katie squealed. “We’re actually here!”
By March 2017, they had grown tired of keeping Lincoln from the world. They started showing him YouTube videos of dolphins, fish, seahorses; they told him about saltwater and sunsets.
And on a blustery Sunday, Maggie and Anthony had left Lincoln with Katie and gone to Walmart, where they filled their cart with plastic shovels and pails, a red crab and green turtle, a blue ball. They bought SPF 50 sunscreen, extra batteries for the portable ventilator.
They came home, loaded all the equipment into the van, and strapped Lincoln into a thick, plastic brace, which kept his torso from collapsing: his Iron Man outfit. Then they drove 90 minutes southwest.
“Look at you!” Anthony cried, strapping Lincoln into his medical wheelchair. “Are you excited? We’re finally going to the beach!”
They hadn’t been since Maggie was pregnant, when they thought their baby would be stillborn. She had wanted him to feel the waves against her womb.
“There it is!” Maggie pointed, pushing Lincoln to the end of the walkway. “Do you like it? Wait, let me suction you. Are you okay?”
It took 10 minutes to stabilize him, then his wheelchair got stuck in the sand. So Maggie carried him, until she felt her feet sink in the surf. Anthony trailed behind, keeping the ventilator dry.
“Do you want to feel it?” Maggie asked, dangling Lincoln’s limp feet above the shore. She dipped him until his toes traced ripples in the wet sand. “There! That’s saltwater!” she cried. “I can’t believe we’re really doing this!”
The sun warmed Lincoln’s face. The wind tousled his hair. Maggie pressed a shell into his hand. “Mama,” Lincoln signed, “I love the sun. I love the water.”
Anthony built a castle in the sand.
By the time Lincoln was 3 ½, he had learned to sign more than 200 words. The breathing tube made talking impossible, and he couldn’t move his left hand much, so his speech therapist had taught him a modified version of American Sign Language.
In a notebook by his crib, they kept a list of all his signs: Mama, Daddy, Aunt Kit-Kat, nurse, cat, cow. He could even string together sentences.
“New diaper please now.” “Play with Mr. Potato Head.” “I want iPad.”
They had fallen into a sort of normal, where Maggie and Anthony felt they could handle Lincoln’s daily crises.
Mackenzi Coker, his speech therapist for more than a year, had hesitated to teach him words for foods he might never be able to eat or sports he might never play. But Maggie and Anthony encouraged her to show him everything.
On a Monday in April 2017, Mackenzi leaned over Lincoln, beaming. “Are you ready to play?” she asked.
Lincoln’s mouth curled up slightly at the edges. For months, Mackenzi had been massaging his cheeks, manipulating his lips, teaching him how to smile. He knew how happy it made everyone when he tried.
Today, Mackenzi wanted to do something different.
She reached into her shoulder bag, pulled out a bouquet of lollipops.
After gene therapy, Mackenzi told Maggie, Lincoln should be able to eat, instead of getting food through a stomach tube. But he had to be taught to suck and swallow.
“I want to start introducing things into his mouth, textures and flavors, so he won’t gag,” she said.
Those also would be the first steps toward talking.
Maggie dreamed about Lincoln’s voice, what he would sound like, what he would say. On the best nights, she woke up believing she heard him whisper, “Mama.” That would be enough.
“All right, Mr. Lincoln, today, for your tasting pleasure, we have lemon, grape, strawberry, cream soda … ” said the therapist, showing him each Dum-Dum. “Pick whatever you please.”
Lincoln pointed to the green one, sour apple, which Mackenzi unwrapped. “Here, try it,” she said, touching it to his pale lips. “Open your mouth.”
He wouldn’t, so Maggie took a lick, “Mmmmm!”
“It feels funny, sticky, doesn’t it?” asked Mackenzi. “Here, give me your tongue, all the way out.”
When Lincoln parted his lips, just a little, she popped in the lollipop. He seemed surprised. Then closed his mouth around it. “Good job! Hold it! How does that taste?”
Lincoln stuck up his right thumb. Then, for the first time, they saw him swallow.
“Whaaat?” asked Anthony, who had just come into the room. “How did you get him to do that?”
Everyone started clapping. Even Lincoln.
Maggie kept checking websites, emailing researchers, begging doctors for updates about the clinical trial. She messaged moms of other boys with myotubular myopathy, rumors and facts flying through their Facebook family.
They learned that doctors would include 16 boys across the United States in their research, at three different hospitals. But only 12 boys would be included in the trial, and only nine would get the treatment. One at each location would remain “the control.” A year or more later, after the trial was completed, those boys would get shots, too.
Maggie posted news on her Facebook page: The dogs that had been dosed were still doing beautifully. The company manufacturing the gene therapy — Audentes Therapeutics — had raised millions more in investments. The University of Florida had enrolled four boys in its trial.
“When Jamie was born, it was like we’d been robbed”
Lincoln was the first, then a 2-year-old from Orlando and a boy in Texas, who was about Lincoln’s age. The other boy in the study was Jamie, a 2-year-old who lived in Melbourne. For months, Maggie had been sharing FaceTime calls with his mom, Angelica Santiago-Townshend.
Jamie was much sicker than Lincoln, because the defect was in a different place on the chromosome. His face was always slick with secretions, which streamed from his nose and mouth. He didn’t react to voices, faces or TV. He had almost died at home, six times in six months, and ambulances had rushed him to the hospital.
Lincoln still had never been hospitalized, a point of great pride for his parents.
Later that spring, Maggie and Angelica blew up each other’s phones. The Food and Drug Administration had approved a new drug application for a gene therapy trial to correct their sons’ disease.
“Oh. My. God,” Maggie posted on Facebook. “Crying and shaking uncontrollably.”
There was still no word on when trials might start. But at least now, there didn’t seem to be an if.
He needs a voice, the preschool teacher had said.
Lincoln’s vocabulary was stellar, she told Maggie and Anthony. On flashcard tests, his comprehension scores were in the 6-year-old range — twice his age. He could sight read words in Dr. Seuss books and sign three verses of Itsy Bitsy Spider.
Lincoln’s parents and some of the nurses understood his signs, but he couldn’t communicate with anyone else.
Donna Daly had been coming over to work with Lincoln for months, two days a week. In the fall, she wanted to start videoconferencing Lincoln into her classroom at Mendenhall Elementary.
He would need to interact with other kids.
So she brought him a computerized device with big, square buttons, each with a colorful picture that corresponded to a word: Fan. Blanket. Frustrated. Suction. More. When he pushed one, the machine spoke.
“He’s been using it a lot,” Maggie told the teacher. “He has so much to say.”
That morning, when she had tried to go to her office, Lincoln had typed: Where are you going? This is not what I want. “So, of course, I came back and cuddled on him,” Maggie said.
The teacher handed him the device. “Now, what do you want to do?”
Without hesitating, Lincoln pushed the button in the center of the pad. The mechanical voice said: Walk.
On a warm weekend in May 2017, Maggie’s mother stood outside the front door, sobbing. She wouldn’t knock. She couldn’t go in.
After 30 years, she was still crippled by grief.
She blamed herself for her son Adam’s death, which had left her too damaged to take care of her daughter. Now, she felt she had doomed her only grandson.
Marsha Hoyle, 49, hadn’t seen Maggie in years. She had never met Lincoln.
She couldn’t bear to see him suffer or to fall in love with him.
But by then, Maggie said science might actually save him, and Marsha’s husband convinced her she should see them both.
They had driven six hours from the Panhandle, and he had pushed her to get out of the car.
“You need to do this. You need to see that they’re okay,” said her husband, Jerry. He put his arm beneath her elbow. She took a deep breath. He knocked.
“Come on in!” Maggie called. “Wash your hands.” Marsha did. Then she froze. Standing by the sink, she saw Lincoln and started shaking.
Anthony walked over and wrapped his arms around his mother-in-law. “I want you to know that our son is alive because of you,” Anthony told Marsha. “If you hadn’t had Adam, and held onto him, we wouldn’t have known we could do this.”
Maggie hugged her mother, too, and her aunt and uncle who had come, everyone embracing in the kitchen. Then they walked into the living room. They had moved Lincoln out of his crib that morning, into a “real big boy bed.” Stretched out on new, mint green sheets, he looked so long.
Marsha stared at her grandson through tears, not daring to reach out and touch him. The whoosh of the ventilator brought her back to her own son. She couldn’t believe Lincoln was so alive, even smiling at her.
“He’s just amazing!” Marsha cried. She bent over her grandson and cooed, “You’re going to get that cure.”
Lincoln looked up, raised his right hand and signed the sentence his parents had taught him: Hello, Grandma Marsha!
Click here for Chapter 6: The Rescue.
Senior news researcher Caryn Baird contributed to this story.
Contact Lane DeGregory at [email protected]. Follow @LaneDeGregory.