Lane DeGregory Follows a Family Waiting for a Medical Miracle

Lane DeGregory, a Pulitzer Prize–winning enterprise reporter at the Tampa Bay Times, was writing about a photographer who took portraits of terminally ill children, when she was tipped off to an astonishing story. One of the children’s mothers, Maggie Hoyle-Germann, pulled DeGregory aside and said, “You should do a story about us. We’re waiting for a miracle.”

Those words were the start of a three-year science-reporting journey, in which DeGregory worked to balance the latest research with a family’s ongoing search for a cure.

As DeGregory chronicles in her eight-part series “Lincoln’s Shot,” published in December 2018, Hoyle-Germann’s son, Lincoln, was born with curly black hair, chubby cheeks, and X-linked myotubular myopathy, or MTM, a rare, genetic muscle disease that mainly affects boys. Because the disorder reduces the body’s ability to make myotubularin, a protein thought to be necessary for muscle development, babies with MTM lack muscle tone and have a “floppy” appearance. Most MTM patients don’t live past early childhood.

Lincoln couldn’t sit up, eat, smile, cry, or breathe without a ventilator. His world was confined to his crib; the ceiling was his sky. No one knew whether Lincoln was aware of his surroundings until he was six months old, when he adjusted a mirror hanging over his crib so he could see in the reflection his mother’s face.

Although doctors have known since 1996 which gene is responsible for MTM, they couldn’t offer patients any comfort in a cure. Parents of MTM children were told to go home and wait for their child to die. But in 2017, after a rigorous screening process, three-year-old Lincoln was chosen to participate in a limited gene therapy treatment trial. The therapy would introduce into Lincoln’s cells new genes that contained the right instructions for making myotubularin and might cure him. But if anything went wrong, the treatment could also kill him faster.

In more than 30 years of reporting, DeGregory had never come across a story like this.

“There’s the human story of a little boy who was doomed to die, [but] who might get a second chance at life,” DeGregory says. “I mean, could this really be a miracle type of thing?”

DeGregory was also drawn to the context: The science and federal regulations around gene therapy were falling into place right at the time Lincoln needed them most. And Lincoln’s parents were willing to give DeGregory unprecedented access to their personal lives to tell that story.

DeGregory and her editor decided they would follow Lincoln through his gene therapy clinical trial, which was expected to take six months. But because of setbacks in the clinical trials and complications from Lincoln’s illness that sent him to the emergency room, the story took three years to report.

Beyond telling a story that didn’t seem to have an end in sight, DeGregory faced another challenge: To fully tell Lincoln’s story, she would have to explain the science of genetics to readers, even though she didn’t regularly cover science.

Here, DeGregory tells Jennifer Lu how she distilled three years of reporting into a story that is vast in scope, yet intimate—and how waiting to write and letting scientists give emotional interviews made her story better. She offers more behind-the-scenes details on her writing podcast, WriteLane. (This interview has been edited for length and clarity.)

 

What do you look for in a story and why did you want to tell Lincoln’s?

I look for stories that are going to surprise people and stories that are going to make people feel or care. I really like stories about people in the shadows, [stories that bring] readers into a world they might not be able to immerse themselves in. Most readers don’t know how someone taking care of a child with a terminal illness lives their life.

There’s an acronym that I use when I’m looking around for stories: CAST. I want strong characters, action, an interesting setting, and a universal theme so that even if someone had never heard of this or doesn’t understand it, they can connect to it in some way. I thought the theme was hope. My editor thought it was luck, that [Lincoln] was born into this period in time when science and technology might be able to offer hope.

You said on your podcast that you accumulated 42 legal pads full of notes. When you’re working on such a lengthy project, how do you avoid becoming overwhelmed by the large volume of reporting material as you sit down to write?

A lot of times I beat myself up over not starting to write sooner. Like, I should have written that scene when I came back from an interview. I will jot down thoughts or phrases or, Oh, I know what the cliffhanger’s going to be, on scraps of paper, envelopes, grocery lists. But I don’t like to think holistically about the story until it’s pretty much time to write. In this case, I’m glad I didn’t because some of the things I thought were big milestones at the beginning ended up not being so big as the story played out, though it was completely daunting to have that much information and that much reporting.

 

 

Before I started writing, I took a couple of days to walk around and untangle my brain. Afterwards, I sat down with my editor in front of a whiteboard, trying to figure out where to break these narratives. I had the story of Lincoln and his parents, and I had the story of the science and gene therapy. We made two different timelines to see where they braided and came together. With those scenarios in mind, we decided we were going to weave in and out between the personal narrative and the science and clinical-trials narrative. We came up with eight parts, and I treated each of the eight parts like it was its own separate story.

How did you keep track of all your notes?

I have a process: I read through all my notes and notebooks and then I take notes on my notes, so each one of my legal pads becomes one page of notes. That refreshes me on what things I want to include and what themes I am looking for.

I don’t really outline in the traditional sense of outlining, but I make a list of scenes and a list of characters and I do a big timeline before I start to write. That helps me say, Okay, I’ve got four scenes at the University of Florida gene therapy clinic. I do not need four scenes, I need one. That helps me pick if they’re repetitive or if they feel familiar after the initial introduction.

After you organize your notes, how do you switch gears and start writing?

I put my notes away in my kitchen or in the trunk of my car, and I write the story without my notes, because I think it’s much easier to tell a story if you’re not flipping pages and you’re not beholden to somebody else’s quotes. You can write it better than most people can say it, and when you’re fumbling through your notebook you get caught up in other people’s words and phrases.

 

 

The ending you expected when you started reporting—Lincoln getting an actual shot at gene therapy treatment—kept getting delayed. What was it like, watching and waiting for an ending, given his fragile medical health?

I don’t know that I could have done this story if I hadn’t been a mother myself and felt what Maggie was feeling in terms of being willing to go to the ends of the earth for your child and being able to see things in them that other people couldn’t see.

And I would have been attached to Lincoln if it were just three weeks, but it was three years of watching this little guy grow from a toddler to a six-year-old and seeing him develop these relationships and this intelligence. There was no way I could not fall in love with this little guy and be rooting for him. I knew from the beginning, just like Maggie knew, that there was a chance every day that he wouldn’t live to see the next day. It’s very, very real for them to live with that. And I started sort of living with their uncertainty and their pain. The first thing I would do every morning for three years was check their Facebook page, being like, Is he okay? And there were so many times when he wasn’t.

It became really terrifying, not just as a journalist being like, What about my story? but about this little guy’s life and all the sacrifices his parents were making to make sure he got whatever treatment or care they could give.

How did you cope with those feelings while reporting?

I don’t think I could have been objective in this situation, and I stopped trying to hide my tears. Most of my stories I’ve done, I tried not to cry in front of the people that I’m writing about, but with Maggie and Anthony, I was so invested in them that it made it harder for me to ask them the hardest questions. I found myself struggling to ask them, What happens when he dies? and Is this little guy’s life worth the million dollars, or whatever gene therapy costs? You have to ask these questions as a journalist, and usually, I’m fine with it, but I found myself rehearsing in my head and apologizing to them for having to ask some awfully hard and sad questions when their whole world was riding on this little guy.

On a practical level, how did you plan for the possibility that Lincoln might not survive to receive his shot, and how that would affect your story?

As a journalist, I appreciate not having to force the story into some artificial timetable and being really able to ride it out with Maggie and Anthony until we knew [Lincoln wasn’t getting the shot].

It was terrifying. It was something that was hanging over everybody the whole time. When we started, there were three boys in Florida who were enrolled in this trial, and we wanted to follow all three of them. The idea was, if one of these boys dies, we’d have another one to follow, but thank goodness Lincoln hung in there.

You ended the series with Maggie looking online for other trials after Lincoln was disqualified from receiving the original gene therapy treatment. Why did you choose that ending?

When the company behind the clinical trials told Maggie and Anthony, Anthony was like, I’m not gonna count on fairy tales anymore, but Maggie absolutely couldn’t let go. When we checked back in with them later, Maggie had started looking for other trials.

When I realized how much Maggie was still clinging to whatever thread of possibility of hope there was out there, I thought it was very true in terms of representing where her head and her heart were. I felt like I needed to take the readers there with her and let them know this was not really over. So it ended almost like it began: She finds another experimental treatment on her computer that gives her the next bit of hope.

This story could have been a standalone human-interest story with a smidge of science. Instead, you folded in a richly reported history of gene therapy and chronicled how researchers from around the world moved the science, from finding the cause of MTM to running clinical trials in people. Why did you give the science as much weight as the human stories?

This was a great human-interest story, but it felt like it was much more of a universal story to talk about the evolution of gene therapy. From the beginning, my editor had said [Lincoln] was born at the perfect time. If he had been born two or three years earlier, this science wouldn’t have been allowed [because of a temporary ban on many gene therapy clinical trials].

Once I embraced the idea that it’s a story about Lincoln, but also about gene therapy, that allowed me to go back and trace what has happened and broaden for readers the possibilities of gene therapy beyond this one little kid.

How did you make the science sections as memorable as the sections about Lincoln?

Humanizing the scientists and getting their own personal stories and connections and motivations really elevated the reporting for me. This is going to sound terrible, but I made both of the scientists at the University of Washington cry during the interviews. They were both parents and I got them both talking about being fathers, their own children, and how their relationship with the children [enrolled in the clinical trials] has evolved. They keep Christmas cards from the families in their offices, which I wouldn’t have thought to ask about over the phone or over email. I thought, Oh my God, every day they come to work, they’re looking at the faces of these little boys whom they’re trying to save.

One of the doctors invited [me and John, the photographer] into his home. We met his wife. We met his dog. We hung out at a personal level, and I got to understand what his motivation was and how he came to be part of this huge, amazing project. He was an evangelical preacher guy who became a doctor after his wife almost died in childbirth. So he had something personal at stake there, which I thought was interesting.

 

 

You said on your podcast that writing about science was one of the hardest things you’ve ever done. What made it easier than it might have otherwise been?

My dad is a nuclear physicist, he worked in nuclear reactors all his life, and science was always like some magical other world out there that was so foreign to me that I didn’t even want to attempt to untangle it. So when I got into this story and realized I had to understand it enough to explain it to our readers, that was a huge responsibility and I didn’t want to get it wrong.

Meeting the scientists allowed me to go back later and send pieces of my story to the people I wrote about. I don’t usually do this, but I did with this story because I was so worried about getting things wrong. I sent them pieces of the story about the science and they read through my sections and helped me untangle it, which was incredibly helpful.

I’m 52 right now, and when I was young, I thought I should go in knowing everything and pretending that I understood everything people were talking about. I’ve given up a lot of that, with my ego, because if I don’t understand it, I’m never going to make our readers understand it. It was extremely important to me to be able to tell these scientists, “Say it again; explain to me again; show me; show me through your graphics; walk me through the lab,” and just not be afraid to ask follow up questions or to ask for help.

I was impressed that you were able to convince a pharmaceutical company to let you tour their facilities while they were in the middle of a drug trial you were writing about. How did you do that?

I wanted to meet Matt Patterson, CEO of Audentes Therapeutics, and he kept putting me off. It took eight months of convincing. When he was at a gene therapy conference in Washington, DC, I flew up to DC and met him for lunch after the conference was over. It was basically a meeting to talk about talking. Like, “Can I come and meet you and introduce myself and tell you about the stories that I want to do, and talk about your worries or your concerns about why you don’t want me to do it?”

Having lunch opened the door to have him let me come meet the scientists and tour the lab.

Did Audentes Therapeutics have any stipulations as to what you could and couldn’t write? How did you negotiate with the company?

I had to make concessions that we wouldn’t normally make, like, “We promise we won’t print anything until you guys have a press release out saying what happened [during the trials].” I had to go to the publisher level [at the Tampa Bay Times] to get permission, because normally you don’t want your subjects controlling your release date. But there were a lot of parameters that they wanted me to agree to before they would let me in, and ultimately, it was like, “Okay,” because we weren’t going to get scooped on this, and there was a timetable we had to adhere to.

You attended Lincoln’s sixth birthday in December. How’s he doing?

He’s grown a lot. He’s changed his feeding formula and put on 20 or 30 pounds. [His parents] have a teacher coming to homeschool him, and they’re getting Lincoln out and about a lot more. One of the readers of the series donated money for a medical wheelchair and a new van that can get him into the world a lot more, so he’s not so confined to his bed anymore, which is really lovely.

 

Jennifer Lu is a TON early-career fellow sponsored by the Burroughs Wellcome Fund and a data graphics journalist at the Los Angeles Times. She previously reported on the environment at the La Crosse Tribune in Wisconsin. Her work has appeared in National Geographic, Popular Science, Audubon, and other outlets. Jennifer can be found on Twitter @jenpenned.