Stories about: Rett Syndrome Program

Taking steps towards Rett syndrome awareness

Every October, families from across the globe celebrate Blue Sky Day as a way to bring awareness to Rett syndrome, a neurological disorder that affects one out of every 10,000 girls born each year. On October 22, families from around Massachusetts came together to climb the steps of Gordon Hall at Harvard Medical School to symbolize their daily struggle and hope for the future. A few of those families share what Blue Sky Day means to them. 

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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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