By summer’s end, their world had shrunk. They had stopped going out, even for food. Uber Eats brought meals to their Tampa home. Publix delivered groceries.
Maggie Hoyle-Germann and her husband, Anthony DeLuna, told friends not to come over; they might bring germs. Only nurses and therapists were allowed.
Maggie and Anthony couldn’t take any chances.
Any minute, a doctor might call. And their terminally ill son, Lincoln, would have to be as healthy as possible.
So he could get his shot at a cure.
“I sent UF another email,” Maggie told Anthony one Tuesday. “I call, beg, rant, cry, pray. I don’t know what else to do.”
They had taken a break from working in their home offices and were eating Chick-fil-A on the couch. Though it was well past noon, neither had showered. Anthony was wearing pajama pants. Maggie had pulled her hair into a tangled ponytail. She hadn’t put on makeup in a month. What was the point?
For more than four years, ever since their son had been born with X-linked myotubular myopathy, they had been waiting.
They had never questioned the quality of Lincoln’s life, whether it was worth his discomfort, tying him to machines to keep him alive. Because the cure was coming. This existence, all his limitations, would be temporary.
But now, instead of looking ahead, they started looking back, regretting all they had postponed: Never even trying to take Lincoln to the zoo or Disney World, or a movie.
“We saw the finish line,” Anthony said. “But they kept moving it.”
A year had passed since the first boy got gene therapy.
Lincoln had been scheduled to get treatment on three different dates. But the University of Florida, his site for the clinical trial, had been battling with the drug manufacturing company over safety protocols. Until they changed, doctors there wouldn’t treat any more boys.
“I’m so sick of this,” Anthony said. “We’ve driven up to Gainesville so many times. We’ve put him through all their paces. He’s been poked, prodded and tested. They even took a chunk of muscle out of his leg! For what? Will this all really be worth it?”
They had been anxious about the toll the trial would take on Lincoln. They had never worried about what the wait would do to them. They were gaining weight, losing hope.
Maggie refused to go to a bachelorette party for one of her best friends. She couldn’t face all those happy people, couldn’t fake caring about the engagement ring.
“It’s like bandwidth. You only have so much,” Anthony told her. “There’s nothing left. Just getting through each day drains all your reserve.”
Maggie started calling her therapist every week. Anthony was staying up all night playing The Witcher 3, a video game where he got to be a hero.
“Every year Lincoln lives, I feel like I lose another three off my life,” Anthony told Maggie.
A new nurse had recently asked how old Anthony was and guessed mid-40s. He was 28.
“We need an ambulance. He’s not going to make it!” Maggie screamed from the driver’s seat. She pulled into a Costco parking lot and dialed 911.
Anthony was behind her, on the floor of their van, trying to get Lincoln to breathe.
That morning, at the end of August, a nurse had changed his feeding bag and, somehow, liquid had gotten into his lungs. He was gasping.
“Help him!” Maggie sobbed. “He was so fine last night, playing with his puppets … ”
Paramedics eventually stabilized Lincoln enough to transport him to St. Joseph’s Children’s Hospital. There, doctors discovered that his heart rate was dropping, his organs were shutting down.
They whisked him into surgery, gave him oxygen and a blood transfusion, threaded thin tubes between his ribs. Once they’d drained his lungs, they discovered that the tissue already was hardening, dying. And they found widespread infection: Staph and MRSA.
For nine days, Lincoln was unconscious. Maggie and Anthony sat beside him, surrounded by silver balloons and beeping alarms.
“How you feeling, bubba? Did you get some rest?” Anthony asked on a morning in September, after Lincoln had awoken. His face was still ashen. He was too weak to sign. “Don’t worry,” Anthony said. “We’ll get it all fixed.” He uncurled Lincoln’s right hand and put his finger on his son’s palm.
Maggie bent over his bed asking, “Can you give your mama a kiss?”
When they finally got to bring him home, 19 days later, after they settled him into clean sheets, plugged in all his machines, checked the monitors, suctioned his mouth and nose, squeezed drops into his eyes and found his favorite puppet, Mr. Owl, Maggie ducked into the kitchen and called UF.
She kept thinking that, if Lincoln had gotten his shot, he probably wouldn’t almost have died. Again.
Lincoln was scared this time, Anthony said. He’d never seen him like that.
“That was the worst part,” he said.
Days later, Dr. Barbara Smith returned Maggie’s call. UF was still battling the drug company, Audentes.
Other hospitals were going to dose more boys, Smith told Maggie, so she put in a request to transfer Lincoln to another site.
“I told her that if I needed to get Lincoln to Timbuktu, I’d swim him there tomorrow,” Maggie said. “And she said I should email them, too, put in some pictures, tell them how great Lincoln is. So now I have to make a case for my son?”
Before Audentes would agree to treat Lincoln at another location, the doctor told Maggie, scientists there wanted to see the hospital records from when his liver was bleeding.
“Are they just trying to find a reason to disqualify him?” Maggie asked Anthony.
It took hours for her to write the email. How do you convince the company that holds the cure that your son is worth saving?
She laid out his history with the trial, all that he’d been through.
She attached videos of Lincoln moving his feet slightly, which she called running. “He is brilliant and recently was evaluated for preschool and was testing at a 7-year-old level when he is only 4.5 years old … He is self-motivated and speaks fluent American Sign Language. He also knows bits of French, Hebrew, Spanish and Arabic. He understands, unequivocally, that he has been participating in these trials to get an experimental drug that may make him stronger …
“I would like Audentes to consider transferring him as soon as possible,” Maggie typed in bold, “and bumping his name to the top of the list.”
As she hit send, she prayed, “Please, God, don’t abandon us!”
Of the 16 boys who were part of the initial research, Maggie knew, only two had been treated. Three others had died. Some of the moms thought the company was choosing babies, because they showed better results. One was even meeting milestones for his age, as if the disease had been completely reversed.
Of course, there were other MTM boys out there who were too old, or too sick, to qualify for the clinical trial. And plenty who weren’t chosen. Or whose families didn’t know about it.
But Maggie couldn’t help feeling that her son had been cheated.
She couldn’t sleep. Wouldn’t eat. Lost 11 pounds. She couldn’t concentrate on her job as a social worker, couldn’t help other people with their problems. Neither UF nor Audentes had provided a social worker to see families through the clinical trial.
Maggie’s therapist diagnosed her with post-traumatic stress disorder and told her to take a medical leave from work.
“I’m becoming radicalized,” Maggie told her therapist. “I can see how, when people are oppressed, mistreated and lied to, they do things they would never have considered before. I’m not above showing up in San Francisco in person, making them come through on their promise. I would do anything for my child. He’s worth dying for.”
When she got really upset, which was happening more often, Maggie crept into her room and closed the door. But Lincoln saw her tears, felt her sorrow. He signed funny stories about his stuffed monkey, trying to make her laugh, stuck a piece of tape on her shirt, blew kisses.
Weeks dragged on.
On a Friday afternoon in late September, Maggie called Audentes. Again. Though the company hadn’t yet gotten Lincoln’s medical records, a woman told Maggie that because of the liver bleed in February, it looked like he would not be a good candidate.
“How dare you!” Maggie yelled. “My son deserves a shot.”
If he didn’t get to be in the clinical trial, he would have to wait until the Food and Drug Administration approved the product for market. Which could take years.
“I never thought it would end like this,” Maggie sobbed to Anthony.
She poured Coke Zero into a red Solo cup, added two shots of vodka and swallowed a Valium. He called Barry Byrne, the doctor at UF who had pioneered treatments for muscular disorders. A nurse was watching Lincoln, so they retreated to their room and shut the door.
“He said there’s another company, another drug he feels good about that will be safer and more effective,” Anthony told Maggie. “He sounded really hopeful.”
“But how close is that? What if we don’t have a few more years with Lincoln?”
Maggie reminded him of all that had happened in the last year.
Anthony tried to reassure her. If UF could get them into another clinical trial with another company sometime down the road, he said, they should just do that. “I think we should disenroll from this trial,” he said, “and trust UF to make it right.”
“What if this new treatment won’t accept older kids?” Maggie cried. She argued for waiting on Audentes, to see if it would give Lincoln a dose. “Look at the outcome. There are boys off ventilators.”
“I’m not dumb!” shouted Anthony, who rarely raised his voice. “I get the outcomes. But how much can we trust this company?” He talked about lodging a complaint, calling in the FDA, hiring a lawyer.
Maggie looked at him, baffled. “I don’t need to trust Audentes,” she said softly. “I just need their product. Just 10 milliliters.”
Anthony threw a pillow on the ground, got up and slammed the door behind him.
A few minutes later, he came back. “Can I tell you something?” he said. “I need to tell you something, and I need you to listen to me.” Her eyes widened. He said, “I love you.”
She started to cry.
He pointed to the living room, “Your super cutie is staring at you.”
In Lincoln’s little mirror, they saw him see them, and smile.
In October, it was official: UF was out of the trial.
Audentes said it would try to transfer the two remaining boys to other sites.
Byrne, who had known Lincoln most of his life, who had hoped to dose him in Gainesville, had emailed a colleague at the University of California, Los Angeles.
That doctor agreed to consider including Lincoln at his test site. But he wanted Lincoln to have an MRI first, so he could get a better look at his liver.
If the liver was okay, they could bring him to California.
And Audentes would pay for a medical RV to carry them across the country.
“Okay, son, so here’s what they’re going to do. They’re going to take some pictures here and do some lab work,” Anthony told Lincoln. “Nothing is wrong. Don’t be worried. Let’s do this.”
He wheeled his son across the lobby at St. Joseph’s Children’s Hospital, a nurse trailing behind. Maggie had stayed home that day at the end of October. She was trying to go back to work. So Anthony took Lincoln for his MRI.
After they settled into a hospital room, while they waited for the doctor, Anthony started spinning scenes of the trip he hoped they soon would take.
“What did I tell you about California?” he asked. “What are we going to see?”
His son signed: Trees. “That’s right, the tall trees,” said Anthony. “And what are you going to get?”
Lincoln flattened his arms to his side, and stretched his pointer fingers toward the ceiling. “That’s right,” Anthony said. “Piggy Power!”
While respiratory therapists came in to check Lincoln’s breathing, Anthony pulled out his phone and Googled UCLA medical center. “It’s a 36-hour drive straight across I-10,” he told Lincoln. “A total of 2,157 miles.”
Lincoln had never been farther than Gainesville. After the therapists left, Anthony showed Lincoln the map. “We could go through Albuquerque, go see the Grand Canyon,” he said. “This will be such an adventure.”
So far, seven boys have been treated, Audentes’ CEO said in November. They ranged from 9 months to 4 years old. Four boys got the low dose, the three most recent got a medium dose.
“We continue to see exciting progress,” Matt Patterson announced during an investors’ update. Some boys are able to be off ventilators for hours. Three are breathing totally on their own.
The results, he said, have been better and faster than expected. “And we sure hope they continue to improve.”
His company, he said, spent $120 million in 2018. It had given gene therapy to boys in Los Angeles, Chicago, Bethesda, Md., Gainesville and Toronto. More trial sites would be in London, Paris and Munich.
In the next few months, Patterson said he and his scientists would be meeting with the FDA, discussing how to bring the serum to market. He was optimistic. The FDA recently had approved a gene therapy treatment for leukemia, the first in nearly two decades.
“Our plan,” he said, “is to treat three more boys.”
Maggie looked at Anthony, wide-eyed. “Does that mean there are only a few spots left in the study?”
He took off his glasses and hung his head. “That means this is our last shot.”
The call came Nov. 13. Maggie put her phone on speaker, so Anthony could listen. They crouched together in the kitchen, where they hoped Lincoln couldn’t hear.
The UCLA doctor told them he had brought in experts to evaluate Lincoln’s liver scan. Unfortunately, everyone had agreed: It looks like he has Peliosis, a rare disease that causes lesions to overcome the liver, filling with fluid and blood.
It can be caused by a reaction to a variety of medications. Or triggered by chronic, wasting diseases.
Lincoln’s liver seemed too fragile to withstand the gene therapy.
“Take a chance on him,” Maggie begged. “Please!”
After waiting Lincoln’s whole life for a cure, banking on his rebirth, their hope was snatched away in a five-minute conversation, with a doctor they’d never met. He delivered — in a clinical fashion — what they saw as a death sentence.
Maggie was so flustered that she didn’t ask her usual flood of follow-up questions or demand the experts’ reports.
She fell into Anthony’s arms. He held her and tried to hold himself together.
Maggie called her sister, Katie, and choked out the news. Would Katie please call the rest of the family? Maggie couldn’t bear to keep talking about it.
She thought about Jamie, the boy from Melbourne who had gotten the third shot. He was holding up his head now, scooting across the floor, laughing, eating, even saying, “Mama.”
Science had gotten there, in just 20 years.
With the help of a desperate mom in Florida, a Boston researcher growing skin, a dog from a farm in Canada, a scientist cloning genes in Seattle and a former venture capitalist creating a California company to cure ultra-rare diseases.
The miracle had happened.
Just not for Lincoln.
“I don’t think God gave Jamie what was destined for Lincoln,” Anthony said. “I’m glad he got that shot. It saved his life. Without that therapy, Jamie would have died.”
The rabbi, he reminded Maggie, said we are all cells in God’s body, all connected, part of the sum. Lincoln didn’t get his shot. Maybe, Anthony said, it was for the greater good.
He wasn’t sure he really believed that. But it made him feel better to say it out loud.
Maggie sobbed, then tried to rally. She wanted to be grateful, not bitter.
“We have to just enjoy him as he is, while he’s here,” Maggie said. “He wasn’t even promised to us for a day, and he’s about to turn 5.”
That night, they played with the paper turkey Lincoln had made with his pre-K teacher. He showed them he had learned to add 4+5. He even surprised them by picking up a magic marker with his right hand, lifting it slightly to a whiteboard, and, in shaky letters, writing his name.
“Look at him!” Maggie said. “He’s perfect.”
They hovered over his bed, singing a goodnight song until he fell asleep.
Then, while Anthony sat watch, Maggie ducked into her office and clicked on her computer.
“Hey,” she called a few minutes later. “Come see this!”
A French company called Dynacure had just announced a new clinical trial of a different treatment. Officials hoped to start enrolling patients in a year or two. Maybe they just had to hang on a little longer.
Maggie said to Anthony, “I’m going to email them tomorrow.”
Senior news researcher Caryn Baird contributed to this story.
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