Oliver Gilkison: 2024 Riley Champion
Like all high school freshmen, Oliver Gilkison is finding his way through a new phase of life. He enjoys learning German and is having fun playing on his school’s competitive e-sports team. It’s a kind of normalcy that’s been rare in Oliver’s 14 years—all of which he has spent under the care of specialists at Riley Children’s Health.
“He’s really coming into his own and blossoming, and he’s more on par with his peers,” said Oliver’s mom, Andrea Gilkison. “We’re no longer in survival mode—we’re in anticipation mode, and that’s new for us.”
Born at a healthy weight but in severe respiratory distress, Oliver spent the first 13 days of his life in the newborn ICU. When the Gilkisons took him home, his breathing difficulties worsened. The sleep apnea machine that monitored Oliver’s breathing sounded an alarm every few minutes. Andrea recalls multiple episodes of his skin turning blue and long gaps between breaths. After several visits to the doctor, the Gilkisons’ pediatrician referred the family to Riley. Within an hour of their arrival, Oliver was admitted to the Riley NICU. A tracheostomy was eventually performed to help him breathe, and a seizure extended his stay and prompted more testing. During the most critical period, Oliver was on a ventilator for four days. Three months later, when he was well enough to go home, he still needed breathing support from a ventilator and required home nursing care.
“Once patients have a trach and are on a ventilator, it can be hard to predict how they will do down the road,” said Bryan Hainline, M.D., Ph.D., a genetics specialist at Riley and a member of the team that has managed Oliver’s care. “Given his very rough start in life, Oliver has shown tremendous resiliency in going through school and doing all of the things he does.”
Oliver’s earliest diagnosis was mitochondrial disease — the inability for mitochondria, the powerhouse of cells, to produce enough energy to support organ function. The disease is characterized by many of the symptoms Oliver was experiencing — muscle weakness, respiratory problems, seizures, autism and issues with vision. Advances in genetic testing, Dr. Hainline explained, now suggest that his diagnosis may actually fit into the broader category of neuromuscular disease.
“Humans are remarkable organisms, and with time and the right support, can make wonderful strides,” Dr. Hainline said. “That’s been true for Oliver.”
The Gilkison family is grateful for the care teams at Riley, as well as other organizations over the years, including First Steps and an applied behavior analysis (ABA) center that assisted when Oliver exhibited early signs of autism.
“With a lot of intervention, a little grace from God, and a whole lot of stubbornness and tenacity on Oliver’s part, he’s making it through,” Andrea said. “I’m sure we’re not done and there are more chapters to this story, but right now, it’s great to watch him experience more of the world and to be a bigger part of it.”