Jaeli Williams is the eldest of 2 Syngap sisters, diagnosed in February 2016. Jaeli loves to dress up, sing and dance her favorite songs, right now it’s “dem bones”. She hums the song and knocks her knees just like her favorite skeleton. Her other passion is swimming. We live in Australia and over our summer, Jaeli swims daily. She swims in the pool and the ocean. Duck diving and holding her breath longer than anyone we know. While Jaeli is friendly, cuddly and giggles often, she becomes overwhelmed and frustrated dealing with her impulses, insomnia, seizures and hyperactivity. Jaeli is happy but we wish she could articulate her needs better.
We dream of a day when Jaeli is independent, can advocate for herself and tell us exactly how it feels to be a Super Syngapian.