Tampa Bay Times chronicles a mother’s race to secure a cure for her son’s terminal disease

TAMPA BAY, FL – Maggie Hoyle-Germann always knew there was a good chance her babies would die. Hoyle-Germann is a carrier for X-linked myotubular myopathy, a fatal inherited disease caused by a defective gene that prevents the brain from communicating with muscles. The disease, commonly known as floppy baby syndrome, affects the X- chromosome and generally presents only in boys. After learning that the baby in her belly was a boy, Hoyle-Germann was overcome with worry. A generation ago, three infant boys in her family, including her older brother, had died from the disease. Would her unborn son, Lincoln, face the same fate?

Since birth, Lincoln’s life has been spent in bed, where he receives round-the-clock care from his parents, family and nurses. Near-death experiences and hospital visits are routine. For Lincoln and most children with this disease, the average life expectancy is about 2 years old. But the family has reason to hope. Advances in science and medicine have produced new gene-altering drugs that are now in clinical trials. One shot could change everything.

Starting Sunday, Tampa Bay Times reporter Lane DeGregory takes readers along as Lincoln, now 5, and his family seek to gain access to a cure that could reverse or significantly improve his condition. The eight-part series examines the rare disease, the family’s daily struggles and the work of scientists who race to find a cure.

The series, Lincoln’s Shot, kicks off on Sunday, Dec. 16, in print and at tampabay.com. The series will run on consecutive days through Dec. 23. Readers also can follow the discussion at #LincolnsShot.