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Warwick, UK
22 years old
November 27, 2019

Chloe

Chloe lives at home and 5 days a week she goes to a daycenter for complex needs in our town. She also has access to respite which means she has a lovely social circle. Chloe attended a specialized school up until she was 19 years old.        

The SynGAP1 diagnosis only came 3 years ago, after being on the DDD study for 4 years. It was a huge relief! Originally At 3 years old, Chloe was diagnosed as being non verbal, having global developmental delays and hypotonia. It has been quite a journey since then. At age 7, Chloe was diagnosed with a Rett syndrome variant, despite having a negative test for the mecp2 gene. Eventually the Rett’s diagnosis was withdrawn when Chloe was 14. She didn’t display any of the major signs of Rett’s. Chloe did not receive an epilepsy diagnosis until the age of 18. When Chloe was 15, she experienced the major loss of her grandad, which caused major regression. We lost our Chloe for a very long time.

Chloe is a very different young lady to the child she was. Chloe was very sociable, her mobility was better, and she was generally more managable, Now her behaviors now are much more challenging. She’s now finally progressing after years of regression. In my opinion, her regression was caused by grief.

Chloe loves male company, she loves the show Tweenies, she is an wizz on youtube, loves spinning flashing lights, pajamas, yogurt and crisps. Chloe lives at home with her mum, dad and her two brothers who are 9 and 11. We are fortunate enough that our home was adapted for Chloe. She has a ground floor bedroom with a wet room. So we can keep Chloe home for as long as we can.

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