Mirriam’s Story

Mirriam was born at home in July 2000 and by 18 months was noticeably developmentally delayed.  Thus began an journey that wound through Dr. Ellen Magenis’ genetics clinic and the Smith Magenis Syndrome research work of Dr. Elsea, eventually leading to Dr. Sutton, and the initial paper describing White Sutton Syndrome; Miri is one of the first five identified with the POGZ mutation.

She had microcephaly when she was younger, but her head finally caught up with the rest of her.  She has behavior and emotional regulation issues, developmental delays, and sleep problems. We’ve managed to dodge many of the GI issues- but she does have problems with her weight, and regulating eating habits.

She’s a funny, sassy, loving young woman who plays Uno like a poker star, loves reading, and keeps everyone around her on their toes 🙂