A Foundation Building Strength is a non–profit organization dedicated to finding treatments for Nemaline Myopathy.
A Foundation Building Strength, Inc
A Resource Guide for Families
Download your copy of the Care of Congenital Myopathy Guide for Families
At birth, Ava had some obvious problems. Her hands and feet were mal-positioned and her cry was very weak. The doctors thought because she delivered quickly she would come around within several hours. Three weeks later in the neonatal intensive care unit, Marc and Dana were still learning how to care for their child that had no diagnosis.
Ava could not take milk on her own and on occasion would stop breathing in her sleep. Ava left the hospital with a tube passing from her nose to her stomach for feeding, monitors to tell the Guillets when she stopped breathing, and a suction machine to manage her saliva which she could not swallow.
At 7 months, Ava had a feeding tube placed directly through her stomach wall and a muscle biopsy confirming a diagnosis of Nemaline Myopathy.
Ava is currently walking, though she falls more than typical children. She needs assistance in climbing stairs and continues to be fed by a G-tube. She is taking small sips of water but is primarily fed by a pump with specialized formula.
She still requires on-going occupational, physical and swallowing therapy on a regular basis. She attends pre–school part–time and tries to keep us with her brother and sister.
Ava is beautiful, happy, bright and certainly tolerant after all of the different doctors and procedures that she has endured.