Grace Talley, was born 9 months ago. As she grew and developed, her parents noticed she began to miss developmental milestones such as lifting her head and sitting up unassisted. After seeing a neurologist Grace was diagnosed with a devastating terminal disease called Spinal Muscle Atrophy Type 1. SMA is a genetic disease that affects the motor nerve cells of the spinal cord, taking away the abili
ty to walk, eat or breathe. It is the number one genetic cause of death in infants. SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 Americans is a genetic carrier. (To learn more about SMA visit curesma.org.) Besides being a terminal disease, the most heartbreaking aspect of SMA is there is no cure and no current treatments available to fight it. Treatments and therapies are currently being developed but there is nothing available yet. Grace is the only child of Justin and Kalie Talley, a young couple in their early 20's who live in the small town of Livingston, Montana. Both have full time jobs to make ends meet. In order to give Grace the best life possible and allow Kalie to spend the most of what time Grace has taking care of her, the funds for this campaign would help pay bills so Kalie can work less and spend more time caring for her sick baby. In addition, the funds would be used for travel expenses to children's hospitals in neighboring states for upcoming necessary procedures such as feeding tube and Gtube insertion, etc.
