February 2020

"My daughter Sarah is 23 years old. She was diagnosed with BPAN on Valentine's Day 3 years ago. Until that point she carried the diagnosis of Spastic Quad CP with autistic features. Sarah showed very early delays and then unfortunately her slow development plateaued at age 3. By 5 years old she had regressed and lost most of her accomplishments. Sarah has never crawled, walked or spoken. She has always been a healthy child however she did require bilateral hip surgery at age 6. Over the years she has benefited most from Aqua Therapy and Therapeutic Riding. She always had home-based schooling, which was perfect for her, the school environment was too noisy, chaotic and unpredictable. She is considered legally blind but can read if the font is large enough. She developed occasional seizures in her mid-teens and only recently did sleep issues begin. In fact, in the last 6 months, sadly, there have been signs of increasing decline. She has lost function of her right hand, ability to roll over, and coordination of her tongue when eating. A GTube was placed a month ago.

Sarah is very happy and joyous; she has a great sense of humor and loves to go anywhere at all in the car. She loves music-especially Celine Dion, Judy Garland, Barbra Streisand and opera in general. She thinks life is great and that's all that really matters now. She lives at home with me, her mom. Her two older brothers live nearby and are very involved in her life. She has always been a huge blessing for us in so many ways."


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