As a child, River-Kai was missing one of life’s simplest pleasures that many take for granted: the ability to taste food and eat by mouth.
Because of a diagnosis of dysmotility, growth hormone deficiency and severe neurological gastroparesis, which renders his stomach unable to function or tolerate oral intake, he required constant tube feeding to deliver enough nutrition and hydration to his small intestine. For years, meals looked different for River-Kai than they did for most children his age.
His mother, Catherine, searched for answers at UF Health Shands Children’s Hospital after reading about a surgeon who had helped children with severe gastroparesis through gastric electrical stimulation (GES), an implant device that sends electrical pulses to the stomach muscles to treat drug‑resistant nausea.
“The care River-Kai has received at UF Health Shands Children’s Hospital has been comprehensive and life‑changing,” Catherine said.
In 2014 at 4 ½ years old, River-Kai underwent his first GES trial. The trial produced positive, encouraging results, and he was able to eat his first hot dog without a gastric reaction, a milestone that once seemed impossible.
A few months later, at age 5, the GES was permanently implanted by former UF Health pediatric surgeon Dr. Saleem Islam, transforming his life in profound ways.
“From the moment he was able to eat his first hot dog to the placement of his permanent implant, his quality of life has steadily and dramatically improved,” Catherine said. “This therapy has given him the opportunity to truly live — to enjoy everyday moments that many take for granted.”
Now 16 years old, River-Kai has progressed from relying on feeding tubes to gradually eating on his own gaining a level of independence that once felt out of reach. The GES allows him to participate in activities that once would have been impossible while connected to a feeding machine, like the jiu‑jitsu training he has taken on since he was 8 years old.
“The ability to experience flavors, share holiday meals with family and participate fully in life has been invaluable,” Catherine said.
River-Kai has continued to receive multidisciplinary care at UF Health Shands Children’s Hospital, including follow‑ups with specialists in surgery, gastroenterology, nutrition and endocrinology.
He is currently under the exceptional care of UF Health pediatric surgeon Shawn Larson, M.D., FACS, and his surgical team, pediatric gastroenterologist Genie Beasley, M.D., who consistently listens to and values his input, and pediatric endocrinologist Paul Hiers, M.D. — the first endocrinologist who his mother said has made him feel truly comfortable..
Pediatric surgeon nurse practitioner Erin Murray, APRN, FNP, CHES, has been with him every step of the way, supporting him through challenging hospital stays and milestones and providing a sense of familiarity and comfort more than two hours from home.
“Many of the nurses on the medical‑surgical team have become some of his favorites, consistently offering compassionate, attentive care,” Catherine said. “Their faces and kindness never fail to brighten his day each time they walk into his room during hospital stays.”
The care he received at UF Health Shands Children’s Hospital was made possible in part by funding from Children’s Miracle Network for equipment, research and patient‑support programs he and his mother relied on when they needed them most.
Catherine has received gift cards for food and gas as she travels to and from the hospital daily while attending her nursing program. River-Kai has been fortunate to benefit from the UF Health Arts in Medicine, Child Life and Streetlight programs.
These programs keep him comfortable during hospital stays. They provide art supplies, and volunteers print out his schoolwork and regularly take him to activities in the teen lounge.
“Through these programs, we’ve met many wonderful and caring volunteers who have made a lasting impact on River-Kai’s experience,” Catherine said. “Their thoughtfulness and support have made a meaningful difference for both of us.”