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Support Rockin' For Ryan

Eversource Walk for Boston Children's Hospital

Sunday, June 11, 2023 | -172 Days to Go!

Donations support:

Raised So Far: $15,000.00

Fundraising Goal: $15,000.00

Why We Walk

Team Roster Amount Raised

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2023 Walk

Rockin' For Ryan

No matter how much one-year-old Ryan ate, he was always hungry. He wasn’t growing and missed milestones, but his pediatrician could not get to the bottom of it and so he sent him to Boston Children’s Hospital for answers. Here he was eventually diagnosed with Partial Mitochondrial DNA Depletion Syndrome. It’s a rare condition that makes the "batteries" of his cells work overtime. Without treatment, the body fails to generate enough energy to function properly and can affect multiple organs such as the brain, kidney and liver.

“For Ryan, 30 minutes of sitting on the couch would burn 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, 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, collaborate 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 11, 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, avid reader, and he loves math and solving puzzles, especially the rubik’s cube!  

Our team is participating in the Eversource Walk for Boston Children’s Hospital on June 11.

Every dollar we raise funds breakthrough research, family support services and vital services not covered by insurance. Your gift will:

  • give children battling the most complex diseases treatments they can't find anywhere else;
  • help children in your town and those across the world get a second chance;
  • fuel 3,000+ researchers working to find cures;
  • help patient-families in crisis with urgent needs, including housing, food and clothing;
  • bring crucial care to families through not one, but four, outpatient psychiatry clinics;
  • and so much more.

Please support our fundraising and the children and families at Boston Children's and beyond.

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