Why was one-year-old Ryan always hungry, no matter how much he ate? He wasn’t growing and missed milestones. His pediatrician could not get to the bottom of it, so he sent Ryan to Boston Children’s Hospital to find answers. Here, he was diagnosed with partial mitochondrial depletion syndrome. It’s a rare, potentially life-threatening condition that makes the “batteries” of his cells work overtime. Without treatment, the body fails to generate enough energy to function properly and it can affect multiple organs such as the brain, kidney and liver.
“For Ryan, 30 minutes of sitting on the couch burns as many calories as I would running on a treadmill for two hours,” explains his mom. His super-charged metabolism requires about 4,000 calories a day—and even more on the days he’s out on the soccer field. Ryan often supplements the extra calories he needs with an overnight feeding tube or high-protein shakes. The condition can also cause weakness and pain in Ryan’s muscles and legs—sometimes so much that he can barely walk—but he never complains.
There is still a lot to be learned about Ryan’s rare condition. The mitochondria in his cells are only partially depleted and it’s not clear if the disease is progressive or not. Ryan’s care team, which includes experts in gastroenterology, radiology, metabolism, neuromuscular, cardiology and nutrition, collaborates with researchers to carefully monitor his progress and find answers for his unique needs. Together, they help him stay healthy and play the sports he loves.
I’m grateful to have an amazing team of experts and researchers tracking my progress. They find solutions for me, so I can compete.
Ryan, age 15
Now 15, Ryan is an outstanding student and soccer goalie. He recently earned his black belt in karate and enjoys playing basketball too. If he doesn’t play pro soccer for FC Barcelona, he hopes to become an astronaut or work at NASA someday.
