Updated:ORANGE COUNTY, Fla. —
A new drug trial in central Florida is giving hope to parents of terminally ill babies and helping to put Lake Nona's newly created
medical center in the spotlight.
Kenneth and Elena Johnson's prayers for a miracle brought them from Atlanta to Nemours Children's Hospital, in Orange County.
Their 4-month-old son Riley has a neurological disease called spinal muscular atrophy. It is expected to take his life before he's
2 years old.
"That's the reality, and we deal with that every day -- probably every second of
every day," said Kenneth Johnson. "This at least gives us a glimmer of hope."
Riley is part of the only clinical trial of its kind in the southeast.
The trial is just one of several innovative research projects and specialty treatments happening at the hospital, which just opened in the past year.
Groundbreaking research isn't just happening at Nemours, but also at the other six medical facilities on the 650 acres called Medical City.
Officials said the research is putting Medical City on the map as the go-to destination for patients from around the country.
"There is really a nice synergy here in Medical City that is allowing us to work together and develop these new types of innovative treatments," said Dr. Richard Finkel, neurology division chief at Nemours Children's Hospital.
Riley's trial will last a year. Doctors said he still faces a tough road ahead, but it's a chance for Riley to survive.
"We would still just try to stay positive and enjoy him for as long as we have. That's right. That's what we do," said Kenneth Johnson.