Stories about: rett syndrome

Seven lessons I’ve learned from Rett syndrome

Mom and AvaAs a mother of a child with Rett syndrome, a disability that affects the brain’s ability to plan or coordinate motor skills, the phrase “take for granted” takes on a whole new meaning. I cannot take for granted that Ava can recite her A, B, C’s or feed herself a snack or go to the bathroom on her own. Quite the opposite. Every day, I strive to properly appreciate the effort it takes for Ava to perform the most mundane tasks. I am the one being “schooled” on Rett syndrome.

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Living with Rett syndrome, living with hope

Ava, age 7, has Rett syndrome.For the first year of her life, Ava Gryniewicz seemed to be developing like any other happy baby. She had learned a few words, including “mama” and “dada,” and was picking up Cheerios with pincer fingers.

But by the time she was 14 months old, everything had changed. Ava started to lose these skills and wasn’t reaching other milestones. At the recommendation of her daycare center, she started early intervention.

“She wasn’t keeping up and her daycare providers were concerned that standard daycare might be too much for her,” says her mom, Joanne. That’s when Joanne and her husband Jack decided to have Ava evaluated.

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Blue Sky Day: Reaching for the stars with Rett syndrome

By Melinda Lancaster

UnknownEvery mountaintop is within reach if you just keep climbing. —Barry Finlay (award-winning author and mountain climber)

On October 11, families and researchers will join together at the steps of Gordon Hall, on the campus of Harvard Medical School, to bring awareness to the struggle of our children with Rett syndrome. As our Blue Sky Girls (and one boy) begin their symbolic climb up the stairs, we are reminded of the effort researchers, parents, caregivers and especially the children themselves make on a daily basis to go onward and upward toward a goal once thought unreachable.

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