Launched TUESDAY August 20, 2019. zReportage #709: Lincoln's Shot: The Tampa Bay Times recently produced 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. Lincoln DeLuna 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..Because Lincoln's condition is so rare, and because boys like him aren't supposed to live this long, the disorder is not included on Florida's list of illnesses ( like cerebral palsy or Down syndrome) that qualify for Medicaid waivers. Federal funds help support the healthy kids program, but each state decides what diseases to cover..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..''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.''..They hovered over his bed, singing a goodnight song until he fell asleep. .''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.''
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MAGGIE DELUNA, left, and her sister, KATIE HOYLE-GERMANN, laugh while holding Maggie's son, LINCOLN AVERY DELUNA, 2, and waiting for the doctor during a wellness visit at Shands Hospital. DeLuna has X-linked myotubular myopathy, a rare genetic neuromuscular disorder.
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LINCOLN AVERY DELUNA, 2, does physical therapy in their Tampa home. DeLuna has X-linked myotubular myopathy, a rare genetic neuromuscular disorder. His elongated and misshapen bones are one of the results of his disease.
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KATIE HOYLE-GERMANN, far left, takes a photo of her sister, MAGGIE DELUNA and husband, ANTHONY DELUNA, as they pack up their Gainesville hotel room after their son Lincoln's doctor's visit. DeLuna has X-linked myotubular myopathy, a rare genetic neuromuscular disorder.
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LINCOLN AVERY DELUNA, 3, plays with a mirror. DeLuna has X-linked myotubular myopathy, a rare genetic neuromuscular disorder.
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MAGGIE and ANTHONY DELUNA take a moment to recompose at the end of a workday after learning that another child has died of X-linked myotubular myopathy. Their son, Lincoln Avery Deluna has X-linked myotubular myopathy, a rare genetic neuromuscular disorder.
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Dr. DAVID MACK leads a dog who has X-linked myotubular myopathy at an animal research lab. The dog underwent gene therapy three years before the photo was taken. Lincoln Avery DeLuna, 4, has X-linked myotubular myopathy, a rare genetic neuromuscular disorder. Their hope is that the genetic therapy will give him a better quality of life.
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Home school teacher DONNA DALEY gives LINCOLN AVERY DELUNA a lesson at home. DeLuna has X-linked myotubular myopathy, a rare genetic neuromuscular disorder.
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MAGGIE DELUNA snuggles with her son, LINCOLN AVERY DELUNA, 3, in their Tampa home. DeLuna has X-linked myotubular myopathy, a rare genetic neuromuscular disorder.
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ANTHONY DELUNA takes his son for a haircut. His son, LINCOLN AVERY DELUNA, 3, has X-linked myotubular myopathy, a rare genetic neuromuscular disorder. Even the simplest of tasks can be exhausting because of all of the equipment required to care for Lincoln.
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ANTHONY DELUNA takes his son to get a haircut from TIFFANY SHEPLER MAXSON, right. His son, LINCOLN AVERY DELUNA, 3, has X-linked myotubular myopathy, a rare genetic neuromuscular disorder. Even the simplest of tasks can be exhausting because of all of the equipment required to care for Lincoln.
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ANTHONY DELUNA puts his son back in bed after bathing him. His son, LINCOLN AVERY DELUNA, 3, has X-linked myotubular myopathy, a rare genetic neuromuscular disorder. Since it's too difficult to bathe him in a bathtub, he often gets sponge baths using absorbent pads beneath him on his bed. Even the simplest of tasks can be exhausting because of all of the equipment required to care for Lincoln.
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ANTHONY DELUNA gives his son a high five after bathing him. His son, LINCOLN AVERY DELUNA, 3, has X-linked myotubular myopathy, a rare genetic neuromuscular disorder.
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Kids in Donna Daly's Mendenhall Elementary School class (from left) DEREK MATIAS, 4, LEONARDO MORALES, 4, JOANNA COLLADO, 4, and ALIYAH RODRIGUEZ, 3, Skype with Lincoln Avery DeLuna as paraprofessional ANA VERBAL holds the iPad. The class Skypes with Lincoln sometimes just say hello, but also to sing songs, read a book and ask questions. They also do review work with colors in Spanish and English, Counting, ABCs and shapes.
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MAGGIE DELUNA, left, and her husband, ANTHONY DELUNA, embrace after listening to an Audentes webcast which announced that the genetic trials will continue, after they feared it would come to a halt. The webcast mentioned positive results, but also revealed an adverse effect on one of the trial subjects. The DeLunas' son, Lincoln Avery DeLuna, 4, has X-linked myotubular myopathy, a rare genetic neuromuscular disorder. Their hope is that the genetic therapy will give him a better quality of life.
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LINCOLN DELUNA watches his parents in a mirror he keeps on his bed. Lincoln Avery DeLuna, 4, has X-linked myotubular myopathy, a rare genetic neuromuscular disorder. Their hope is that the genetic therapy will give him a better quality of life.
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LINCOLN DELUNA sheds a tear while listening to his father, Anthony DeLuna, talk about how he prayed with Lincoln's mother earlier that morning for strength and a cure for Lincoln's disease. The father and son were waiting for an MRI appointment at St. Joseph's Hospital. Lincoln Avery DeLuna, 4, has X-linked myotubular myopathy, a rare genetic neuromuscular disorder. Their hope is that the genetic therapy will give him a better quality of life.
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MAGGIE DELUNA weeps after explaining that her son is no longer enrolled in any gene therapy trial. Lincoln Avery DeLuna, 4, has X-linked myotubular myopathy, a rare genetic neuromuscular disorder. Their hope is that the genetic therapy will give him a better quality of life.
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MAGGIE HOYLE addresses the Children, Families and Seniors Subcommittee with ANTHONY DELUNA and their son LINCOLN AVERY DELUNA, 5, at the Florida State Capitol Wednesday. The family traveled to Tallahassee for one whirlwind day to meet state legislators and push for four words to be added to a healthcare bill that would help Lincoln get the medical coverage he needs. Lincoln Avery DeLuna, 4, has X-linked myotubular myopathy, a rare genetic neuromuscular disorder.
© John Pendygraft/Tampa Bay Times via ZUMA Wire