Sidelle :: BOSCH-BOONSTRA SCHAAF OPTIC ASTROPHY SYNDROME

“Sidelle is a sweet girl who has places to explore and people and things to see! She doesn’t let Bosch­-Boonstra­ Schaaf Optic Atrophy Syndrome get in her way. There are only several dozen people in the world known to have Bosch­-Boonstra­-Schaaf Optic Atrophy Syndrome. Sidelle is one of a few who have donated a small skin biopsy to contribute to the continuation of research being led by the original scientists who discovered this rare gene mutation (NR2F1) at Baylor University in Texas. Since she was diagnosed at one and a half years old via exam sequencing, she’s learned to compensate for her pale optic nerves, Cortical Visual Impairment (CVI) and Intellectual Disability. She’s one tough and feisty cookie but just as sweet as one too. She may have extremely poor depth perception, a narrow field of vision and difficulty processing what she sees but she’s more than willing to explore each new environment to make sense of it in her own way.She has a Curious Quotient that’s off the charts! Since she learned to walk at about 2 1/2 years old, she’s absolutely everywhere. She may stumble and trip but quickly regroups, picks herself up and is on her way. Sidelle is receptively bilingual and understands French and English. She does not use words at this point but communicates with sign and is starting the PECS method. Based on her personality and how she lives her life day to day, if she did have words we’re pretty sure this would be her motto, “Don’t worry! I don’t need to be fixed. I will learn how you do things, if you learn how I do things.”She and her parents have been on one heck of journey so far filled with valleys and peaks with many more to come. Sidelle makes her family laugh, challenges them, makes them proud and best of all makes them complete.”

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PHOTOGRAPHY DONATED BY DERKSEN PHOTOGRAPHY