At only four weeks old Jackson’s parents noticed that he was showing signs of daily pain. At three months old, Jackson was diagnosed with the most severe form of spinal muscular atrophy. The Silvas were told there was nothing that could be done. Refusing to believe that, Jackson’s parents did research on their own and found a clinical trial in Ohio. Jackson was the third child in the world to receive treatment. And while 90% of children with SMA pass away before the age of two, and 50% pass away before 6 months old, Jackson is still here because of the investigational drug he is receiving. Jackson’s parents want all children with SMA to have access this drug, not just the lucky few who have been accepted into a clinical trial.