Age: 2 years old
Parents: Jenny and Rajat Shah

Our angel, Sejal Madeline, was born April 22, 2006 in Williamsville, New York. She has always been a sweet, calm, good-natured baby with a mischievious sparkle in her big brown eyes. We think of her as a little pixie -- a tiny, mischievious fairy.

Sejal (pronounced SAGE-uhl, meaning "river" or "purity" in Hindu) developed normally until about 9 months of age, when we started noticing some gross motor delays. She began physical therapy and was otherwise doing well, speaking about 10-15 words. Then, at 15-16 months, she slowly stopped talking over the course of 6 weeks. She also stopped making eye contact and gesturing. We started taking her to specialists and pushing for more evaluations and therapies.

Finally, after 9 months of investigating and worrying, Sejal was diagnosed with Rett Syndrome. It was heartbreaking, and since the diagnosis she has had some very low lows and further regression. We are lucky, however, that Sejal has a team of wonderful therapists, a fantastic, loving preschool to go to, an unbelievable big sister, tons of family and friend support, and a community of people dedicated and determined to find a cure for RS.

Regardless of her diagnosis, Sejal is still the same sweet little girl with the gleam in her eye that we've always known. We love her with all our hearts and pray every day for a cure.

The Shah Family -- Rajat, Jenny, Simran, Sejal (RS- T158M), and Tej (5/10-7/21/02, hypoplastic left heart syndrome)

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Sejal's Coffee Cup!












Donations to Date: $19,326