Team Rett Runs for a Cure

Erica and Ryan Robertson have a daugher with Rett Syndrome. Erica will run the marathon to raise funds for research. (Michaela Bedell/BU News Service
Erica and Ryan Robertson have a daugher with Rett Syndrome. Erica will run the marathon to raise funds for research. (Michaela Bedell/BU News Service

By Micaela Bedell
BU News Service

This time last April, Erica Robertson wasn’t a runner. Now hopes drives her every step.

She will run this year’s Boston marathon, raising money for research for a rare developmental disease that affects about 1 in 10,000 young girls, including Avery, Robertson’s daughter

Since her diagnosis at age 3, she’s lost most of her motor skills and the small vocabulary she once had. Avery, now 6 years old, is still in diapers, must be spoon fed her meals, and dressed and bathed by Robertson and her husband, Ryan.

“On my worst days, when Avery’s just having a hard time and it’s so sad and devastating, I just think there’s somebody right now working on fixing Rett syndrome,” says Robertson. “Right now, there’s somebody working on it. And tomorrow there will be. And yesterday there was. It just provides so much hope for me.”

That’s what Team Rett is for Robertson, and for the many families that have come from across the country to also run on the team. Hope. The more than $120 thousand they’ve raised so far will fund a research project by The Whitehead Institute at MIT, which will use stem cells to examine how Rett cells react to existing drugs, and move the search for a cure that much farther along.

Ryan Roberston says that when his wife first said she was going to run, “I didn’t really think it was possible because she wasn’t really a runner.”

“She’s trained herself into being a runner which is kind of extraordinary to see,” says Ryan. “It’s the perfect example of never say never.”

Training for a marathon is hard enough for someone with an everyday life, but Avery requires constant attention and supervision. Erica Robertson looks at the marathon as a celebration of months of hard training and sacrifices.

“It’s a sucky disorder to be dealt – especially for Avery because she’s just trapped in her body and she can’t do what she wants to do,” she says. “But of all the things that could have happened I think that we kind of got lucky. I know that it sounds weird to say that, but I really, truly believe in my heart that they’re going to fix it. And that day is going to be pretty sweet.”

Running gives Erica something to strive for, something to help her move forward – both literally, with the marathon, and figuratively in her search for the cure.

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