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Since early on, we knew something wasn’t quite right with Isla’s development. We chalked up her not sitting or rolling over to her being quite chubby, but it was harder to understand why she wouldn’t interact with us. In March of 2017 she was diagnosed with Rett Syndrome.

The diagnosis was made bearable only because we now have answers. We then understood her tummy troubles and hair pulling; her low muscle tone and lack of gross motor skills, things we now know are typical with Rett syndrome.

Since her diagnosis, Isla has developed a slight scoliosis, she can stand assisted but cannot walk, and has seizures that sometimes stop her from breathing. She doesn’t have much practical use of her hands but she is still able to feed herself with a bottle. Isla cannot speak but has made gains in communication with her eye gaze device.

Despite everything, Isla is a happy, quirky kid with a delightful sense of humor. She loves music and interaction with other kids. Most girls with Rett Syndrome are quite smart if given the tools to prove so. They are essentially trapped in a body that doesn’t work for them. 1 in 10,000 girls are born with RS and because it’s not as rare as you’d think, research is coming along. There is hope. To find out more: Warm regards, Lindsay

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