Janelly Martinez-Amador, 6, who was born without bones, plays on the floor at her Nashville home.Nurses didn’t know a breakthrough drug was on the horizon when they dressed the tiny little girl in a pink outfit for a hospital photographer to take her picture.
It was a photograph for her parents – an image of solace so they could remember Janelly Martinez-Amador free of tubes. Doctors told them then there was nothing more they could do for a child without bones.
Born with the most severe form of hypophosphatasia – a genetic disorder that prevents skeletal mineralization – the girl didn’t have the ribs to support breathing. Her parents, Salvador Martinez and Janet Amador of Antioch, were facing the prospect of deciding whether to take her off a ventilator.
But Janelly held on long enough for a last chance at life. At age 2 years and 8 months, she entered a clinical trial involving an experimental medicine at Monroe Carell Jr. Children’s Hospital at Vanderbilt. Four years later, Janelly can dance.
Read more at The Tennessean.