In the late 90s, Mary and Brad Kish were so excited for the birth of their daughter Michelle. There was no indication, during pregnancy or delivery, that anything was going to be wrong with her.
But the little girl from Illinois was born looking much different from other “normal” babies. She had distinct round, childlike facial features, alopecia and a beak-like nose.
It wasn’t until a geneticist recognized similar characteristics in a medical textbook that Michelle received a diagnosis. That’s because Michelle was born with a condition so rare there were only only 250 known cases worldwide.
The occurrence of Hallermann-Streiff syndrome is one in five million. It causes an exhaustive laundry list of medical issues, including but not limited to vision impairment, hearing deficit and cardiomyopathy. She relies on a feeding tube, ventilator, hearing aid, cane and electronic wheelchair.
Michelle also has a form of dwarfism. Though her older sister Sarah is only two years older than her, Michelle only comes up to just above Sarah’s waist.
Despite the hospitalizations, illnesses and terrifying close calls, Michelle is now 20 years old. Because of her appearance, she is constantly mistaken for a child.
But wait until you meet this amazing young woman. I did not expect her to have this personality.