8-year-old Jackson Saville and his mom Stacy in their home in Virginia Beach, Va., on Tuesday, January 31, 2017. Jackson lives with Spinal Muscular Atrophy, a rare genetic condition that his sister, Morgan, died of when she was 3 years old in 2005. The FDA recently approved the first drug called Spinraza to treat it, and Jackson started receiving the medicine in March 2017.