Boston Children's Hospital Every Child Fund

Ryan's mom and dad wondered, "How can our youngest eat more pizza than his bigger, older siblings?" No matter how much one-year old Ryan ate, he was always hungry but 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 DNA 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. Eating can be a chore so those extra calories he needs are often supplemented by a feeding tube overnight. 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.

Now 12, Ryan is the ultimate team player, known for inviting everyone to join in on the playground. He is incredibly kind and always includes kids that are shy or hesitant to jump in. Ryan is an outstanding soccer goalie and enjoys basketball, karate and flag football. He’s also an excellent student, an avid reader and loves math and solving puzzles—especially the Rubik’s cube!

Watch this video to meet Ryan and see how you can make healthy futures possible for kids like him.

Your gift will turn discoveries into cures and innovative treatments and bring hope to families at Boston Children’s Hospital!