Marc and Dana Guillet, who live in Palo Alto, California, founded A Foundation Building Strength in 2008, after their third child, Ava, was diagnosed with Nemaline Myopathy. There were no organizations dedicated to funding research for Nemaline Myopathy.
Our Story
After an uneventful full term pregnancy, normal pre-natal visits and amnio testing, Dana and Marc were set for another easy delivery and a short trip home to share baby Ava with her older siblings.
At birth, Ava had some obvious problems. Her hands and feet were mal-positioned and her cry was very weak. Her muscles were low tone or “floppy.” Three weeks later, while 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 has gained incredible strength over the years, but our desire to help the entire Nemaline Myopathy community has created the world’s leading non-profit organization dedicated solely to finding treatment, providing the NM community with information, support and raising awareness and advocacy for the rare disease. ”
– Marc and Dana Guillet, Founders
