Originally published on December 16, 2018
December 16, 2018
A Tampa boy was born unable to breathe or swallow, doomed to die. But across the country, researchers were fixing floppy dogs with the same condition. Could his parents keep him alive long enough for science to come up with a cure?
About the story
Reporter Lane DeGregory and photographers John Pendygraft and Lara Cerri met Lincoln DeLuna in February 2016. His parents agreed to allow the Tampa Bay Times to follow along as they waited for a cure. Maggie Hoyle-Germann and Anthony DeLuna also provided photographs and videos of Lincoln’s first years. The reporting for this story involved traveling to Seattle, to the Institute for Stem Cell and Regenerative Medicine lab at the University of Washington; to San Francisco, to the offices of Audentes Therapeutics; to Gainesville, to the Powell Gene Therapy Center at the University of Florida; and to Melbourne and Jacksonville, to visit other families touched by myotubular myopathy. The reporter was present for many of the scenes included in the series and recreated others by interviewing those who were there.
Click Read Story to start the eight part series now, and watch the documentary video.