The boy
This is Chapter 3 of the eight-part series Lincoln’s Shot. Click here for the other chapters.
He couldn’t coo or cry. Couldn’t move his mouth to smile. Three months after Lincoln DeLuna was born, he still didn’t even seem to focus on his parents’ faces.
They believed he was in there, that his mind was fine. He wasn’t “just a vegetable,” as one nurse called him.
But they had to show everyone he was worth saving.
“We can outsource his breathing and eating,” his dad, Anthony DeLuna, told Lincoln’s mom, Maggie Hoyle-Germann. “His brain is up to us.”
Lincoln’s first summer, in 2014, Maggie and Anthony got new jobs with Humana insurance, her as a social worker, him in IT. They got raises and were able to work from home.
They moved from their small, third-floor apartment to a rental house in a winding Tampa subdivision. It had an open floor plan and four bedrooms, so they’d each have an office, and Maggie’s younger sister, Katie Germann, could move in to help care for Lincoln. He had been born with a fatal genetic defect, X-linked myotubular myopathy.
They turned their new living room into a nursery, set the crib in the center: Everything, always, revolving around their son.
They tucked him in between Winnie the Pooh bumpers, put a stuffed Owl and Tigger at his feet, popped a frog pacifier between his lips. On the wall beside the TV, they nailed a whiteboard charting the dozen medications that flowed through his feeding tube: Robinul, Prilosec, Albuterol, Miralax, Motrin, Benadryl … Another column tracked his bowel movements, a third his mealtimes and amounts.
Anthony buried his cello in the corner, behind the medical stroller.
Maggie framed her ballet shoes.
Above a window, they hung a wooden plaque: “Hope is the ability to hear the music of the future. Faith is the courage to dance to it today.”
When Anthony or Katie took the night shift, Maggie woke up listening for the reassuring whoosh of the ventilator, counting its breaths: 25 per minute meant Lincoln was stable.
Then, before she got out of bed, she would beg God: “Please, not today. Don’t take him today.”
Bright lights hurt Lincoln’s eyes, so Maggie and Anthony kept their new house dark. Warm air made it harder for him to breathe. So the air conditioning was a constant 70 degrees.
“Could this really end like a fairy tale?”
They learned to sterilize trach tubes and humidifiers, to listen for blockages through a stethoscope and clear mucus plugs, to rub their son’s belly to help him poop. Every 90 minutes, he needed a new bag of feeding formula. Every half-hour, lip balm. Every 10 minutes, they had to suction his mouth and nose.
They worried about infection. And what if the power went out or something went wrong with one of the machines? What if he just stopped breathing?
They wondered how much pain he was in. They learned to read the signs and wipe his silent tears.
Anthony memorized the manual for the ventilator, then ordered the doctors’ version so he would know all they knew. He figured out how to chart Lincoln’s breathing patterns, learned when to increase his oxygen intake, mastered all six modes of the machine.
Maggie maneuvered through the tangle of Medicaid. During the first few months, their bills topped $2 million. They kept working, to contribute as they could, and tried not to think about what insurance wouldn’t cover. Round-the-clock nursing, an approved expense, cost $30,000 a month. Formula was $11,000. The power bill often topped $450.
Nursing help was sporadic, overnight shifts almost impossible to fill. And Maggie and Anthony often found themselves alone on weekends. Thank goodness for Katie.
She was 24, studying to get into school to become a physician’s assistant. She swore that, because she might carry her family’s curse, she didn’t want kids. She’d never been tested.
Katie adored Lincoln and spent late nights and long weekends bending over his crib. She called herself Aunt Kit-Kat and spoke to her nephew in a high, sing-song voice. “Who’s your favorite Auntie? Who loves you mostest?”
They left their front door unlocked for the stream of nurses and therapists, equipment specialists and UPS drivers. Their garage filled with boxes of trach tubes, surgical tape, oxygen tanks and powdered food.
A ventilator constantly forced air into Lincoln’s lungs. He couldn’t be off it for more than a half-hour, couldn’t be outside for more than five minutes. His body couldn’t handle the heat and humidity. To take him out, they had to start the van, run the air conditioning on high and pack all of his equipment before they could unplug him from the machines and carry him, quickly, into the garage and ease him into his car seat.
So they almost never left the house, except to go to a doctor’s appointment. He had 26 in his first four months.
Most evenings, Maggie and Anthony ordered pizza or picked up Panera. Even when Katie babysat so they could go to dinner, they wouldn’t travel more than five miles.
Just in case.
Alarms were always screaming. They kept having to steel themselves, somehow, to not freak out. At least not in front of Lincoln. They grew confident that they could handle whatever crisis came up better than paramedics who knew nothing about his disease.
So when Lincoln stopped breathing, Maggie did CPR while Anthony adjusted the ventilator settings. When he choked on a mucus plug, Maggie slid a tube down his throat, Anthony tapped on his back, and they suctioned it out themselves.
“It’s okay. Mommy and Daddy are here,” they’d tell Lincoln. “It’s going to be okay.”
After each time they revived him, Maggie collapsed. She called it “falling into the rabbit hole.” Anthony would wait a while, then drag her out and hold her until she stopped shaking.
Then, if a nurse or Katie was there, Maggie and Anthony would retreat to their room, lie side-by-side beneath their comforter and stay as motionless as possible for as long as they could, trying to imagine what it felt like to be Lincoln.
To not be able to turn on your side, scratch your nose or make a sound.
Lincoln was 4 months old when Maggie and Anthony first drove the two hours to Gainesville, to a research clinic at the University of Florida. Alison Frase, whose son had died from the same disease, knew doctors there were studying boys like Lincoln.
During the daylong visit, a half-dozen doctors flipped through the 2-inch-thick binder of medical records that Maggie had organized. They scoured her family’s genetic history, asked about her deceased brother.
They X-rayed Lincoln’s spine, did an ultrasound on his liver, monitored his heart rate, put him through a series of breathing tests, on and off the ventilator, stuck him a dozen times searching for a vein to draw blood.
Through it all, Maggie mopped Lincoln’s eyes, wondering if it was worth it, putting him through more pain.
“We’re trying to start a baseline for these boys, so we can form a database,” one researcher told them. “Would you be willing to bring Lincoln back every few months?”
Ultimately, the scientists told Maggie and Anthony, they were hoping that UF would be part of an international clinical trial for gene therapy.
The same treatment that had saved the sick dogs.
“Of course, boys aren’t dogs,” another scientist warned.
The experimental process could help immensely. Or it could harm the boys, even kill them.
During the long drive back to Tampa, Maggie and Anthony traded questions, wondering for the first time if the treatment would be worth the risk.
What if it made Lincoln suffer more? What if they sacrificed precious time?
But didn’t they have to try everything they could to help him?
Lincoln was okay for now, Maggie said, “thriving with a terminal illness.” How could they gamble losing him?
Anthony answered: How could they not at least give him a chance to live off life-support?
They settled into a hectic routine, tried to stop fearing the future and enjoy whatever time they had with their son. They refused to plan for anything past the weekend.
They filled a bookcase with Dr. Seuss stories. Sang Old MacDonald and Twinkle Twinkle. Played Bruno Mars videos on their phones and boogied around his bed.
They encouraged him to reach for a rubber duck, kick at a Nerf football, bat objects they strung across his crib on a baby gym.
Lincoln seemed uninterested. Or unable.
Until one morning, when he was 6 months old. The nurse hadn’t shown up, so Katie was sitting by the crib. Suddenly, she sprang into Maggie’s office, grabbed her arm and whispered: “Come here! Look at Lincoln!”
He had pulled a small, round mirror off the bar above his bed and was holding it in his right hand. When Katie crept up behind him, he tilted the mirror until he saw her.
“Oh my god!” Maggie cried. “Lincoln, do you see Katie?”
Slowly, deliberately, he turned the mirror to find his mother’s face.
For the first time, she saw him see her.
Maggie and Anthony were always exhausted, rarely alone.
She was back on the pill, keeping her promise to avoid the family curse. But that summer of 2014 — even though they’d been so careful — she missed her period. Then missed it again.
Anthony bought a drugstore test, then went back for two more. They both broke down in the bathroom.
There was a 50 percent chance they would have a girl. And if they had another boy, a 50 percent chance that he would have the same genetic mutation as Lincoln.
So a 75 percent chance this baby would be okay.
They didn’t tell their parents. Maggie made Anthony promise: “Not until we know.”
At 14 weeks, a geneticist drew blood from the fetus. They were having a boy. With a broken gene, just like Lincoln.
Maggie couldn’t catch her breath. Anthony had to help her to the car.
That night, through tears, they thought through their future: Lincoln was 9 months old; it was a full-time job, a constant struggle, to keep him alive. Even if this second son survived, he would have as many needs, maybe more. How could they ever care for two?
It felt like Sophie’s Choice: A mother having to sacrifice one child to save another.
“It doesn’t feel like I even have a choice,” Maggie told Anthony. “It’s not about us. It’s about Lincoln.”
They named their unborn baby Layton and grieved the brother he might have become.
Outside the abortion clinic, protesters pumped their fists and shouted at Maggie through bullhorns: “Murderer! Baby killer!”
She hid her wet face in Anthony’s neck. He wrapped his arm around her. “They don’t know,” he kept murmuring. “They don’t understand.”
He wanted to yell at these strangers: Leave us alone! We don’t want to be here.
Instead, he pulled Maggie closer and stroked her hair.
They didn’t talk all the way home.
Later, when they called their families, Maggie’s aunt was relieved: “You did what you had to do.”
Anthony’s mom was furious: “How could you kill my grandson?!”
This time, the rabbit hole was too deep. Anthony tried to drag Maggie out, but her guilt was paralyzing. She couldn’t sleep. Wouldn’t talk. For three months, she wept, ate doughnuts. And refused to leave the house.
Anthony called in a therapist. Depression. Agoraphobia. Plus, post-traumatic stress disorder. The doctor prescribed antidepressants, anti-anxiety medications and said, “Give her a while.”
So Anthony did.
But after another month, when Maggie was still barely interacting with anyone, not even her son, Anthony couldn’t wait any longer. “You have to come back and go on,” he told her. “Lincoln needs you.”
Slowly, Maggie hauled herself out and pushed forward.
She knew Anthony hadn’t wanted to get married, because of all his dad’s divorces. But after all they had been through, after keeping Lincoln alive and losing Layton, Maggie wanted to officially be a family.
Anthony would have done anything to make her happy. So he took her to Sam’s Club, where she picked out a blue topaz ring — Lincoln’s birthstone. Then he called his grandmother: Could they have a wedding in her gazebo?
Just before Thanksgiving, their families gathered on the grassy banks of Lake Allen in Lutz. Maggie wore a sleeveless, lace gown and long veil. She dressed Lincoln, who was almost a year old, in a cobalt dress shirt, black vest and, for the first time, long pants.
Katie carried him outside for a few minutes and plugged in his portable ventilator, so he could watch his parents say their vows.
They honeymooned at home, sharing champagne with nurses, singing to their son.
By then, Lincoln could move both hands a bit, hold soft toys and tip his chin. He was nowhere near meeting ordinary milestones. But he was able to interact with others and react to his world.
Maggie taught him to cover his eyes for peek-a-boo. Anthony showed him how to high-five.
Lincoln learned to curl two fingers into rabbit ears and bounce them when his parents sang Little Bunny Foo Foo. He started waving, slightly, when they came near his crib. With a lot of work, he learned to fold down the two middle fingers on his right hand, arc his thin thumb and sign “I love you.”
Whenever he did, Maggie cried.
They didn’t throw a birthday party for Lincoln that December. He was still here. That was enough.
In May 2015, they got an email.
The U.S. Food and Drug Administration had agreed to let a San Francisco biomedical company start tracking boys with X-linked myotubular myopathy.
Four hospitals across the country — including at UF — were going to start putting patients through a series of tests. Eventually, that information could convince the federal government to approve a clinical trial — the first sanctioned gene therapy in almost 20 years.
The study was going to enroll 16 boys.
Doctors at UF asked Maggie and Anthony: Do you want to sign up Lincoln?
Again, they answered with their own questions.
“What if we do it, and he fails?” Maggie asked Anthony. “How could we live with ourselves?
“What if,” Anthony said, “our son could stand up and run to us?”
Alison called, ecstatic. After so many setbacks, after all this time, she couldn’t believe it was actually happening.
“Can you imagine?” she asked Maggie, “if your son got the first dose?”
That night, Maggie scrolled through Facebook, searching posts from other XLMTM families whose sons had died.
The disease, she knew, was progressive and terminal. The longer Lincoln lived, the more he died. Even if gene therapy didn’t cure him, even if it just allowed him to breathe on his own or turn his head … how could they deny him that shot?
Click here for Chapter 4: The Science.
Senior news researcher Caryn Baird contributed to this story.
Contact Lane DeGregory at [email protected]. Follow @LaneDeGregory.