My daughter was diagnosed with a rare and severe form of congenital muscular dystrophy at 3 years old, shes now 7 years, old in 4 years shes rapidly progressed with her condition, we do not know of anyone with the same condition for her to communic...
At birth when I had breathing problems, I was moved to the NICU. I was diagnosed with two other diseases before we received a correct diagnose at the University of Iowa after a muscle biopsy at age 10. I visit a neuromuscular specialist in Des...
Hi
So... I have lived with Nemaline Myopathy for 17 years. I have a tracheostomy, full time ventilation, spinal rods to correct a scoliosis and 24 hour care. I previously had a gastrostomy but I have since had it removed.
I lead a normal, reasona...
