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Series about Tampa boy with rare medical condition took almost three years to report

BOYZELL HOSEY | Times Tampa Bay Times staff photojournalist, John Pendygraft, left and writer, Lane DeGregory teamed up to tell the story of Lincoln Avery DeLuna who has has X-linked myotubular myopathy, a rare genetic neuromuscular disorder.
Published Dec. 16, 2018

Lane DeGregory immerses herself in the lives of the people she writes about. And that's a big reason why she's a masterful storyteller.

Her career has spanned three decades. She's won every writing award imaginable, including the Pulitzer Prize.

But never before has she worked this long on any single writing project.

Two years, eleven months.

Today, we're publishing the first chapter of that labor of love – an eight-part series about a young boy from Tampa with a rare genetic disease and his family's stop-at-nothing efforts to seek a cure.

DeGregory introduces you to Lincoln DeLuna, his mom Maggie, his dad Anthony and a cadre of doctors and scientists. Lincoln suffers from X-linked myotubular myopathy, a disease that affects one in 50,000 boys. His muscles are so weak, he can barely move. Lincoln needs tubes to survive. He can't walk, talk or swallow. He's a smart boy who has learned to sign with his right hand, one of the few parts of his body he can control.

Maggie and Anthony want their son to have a normal life. Any life, really. Without a cure, Lincoln will die. And a single shot might save him.

DeGregory traveled with the DeLuna family to university research centers, rode along to hospital visits, slept over and sat in the corner of the living room, always listening, always seeking to learn more. Photographer and videographer John Pendygraft was often there, too. He's produced a full-length documentary about the family's odyssey.

"I've never had subjects open themselves up as willingly, and embrace what we're doing as fully, as Maggie and Anthony," DeGregory said. "They are among the smartest, and certainly the warmest and most open people I have ever had the honor to write about."

DeGregory's editor is Maria Carrillo, our deputy editor for enterprise. Back in the 1990s, Carrillo started a narrative team at The Virginian-Pilot. DeGregory was one of her hires. They reunited here at the Times a little more than a year ago.
"She's amazing to work with, because she has great ideas, tremendous energy and empathy and incredible talent, of course," Carrillo said. "Those who follow Lane's work obsess about her writing – and it's beautiful – but the power of her stories is really in the reporting. She commits."

Researchers have made remarkable strides to develop a cure for kids like Lincoln. But the science is uncharted and complex. DeGregory spent hours interviewing doctors and scientists to understand how Lincoln could be helped.

"Explaining gene therapy to our readers is a big responsibility and I wanted to make sure it was accessible and understandable, and especially right," DeGregory said.

The series rides the emotional roller coaster. Hope and despair. Expectations and setbacks. Courage and fear.

"After reading this project, and watching this video, I hope readers hug their kids, and count their blessings, and realize how lucky we all are," DeGregory said. "I hope they're in awe of Maggie and Anthony's love, caring and incredible devotion."

DeGregory didn't know how Lincoln's story would end when she first met him nearly three years ago. And I'm not going to spoil it now. You'll have to read the series to find out.

Mark Katches can be reached at 727-893-8441 or mkatches@tampabay.com. Follow him at @markkatches

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