Rare Disease Parent, Caregiver, Patient Advocate, Author & Founder
Texas Rare Alliance
Khrystal Davis is a caregiver of a son with Spinal Muscular Atrophy (SMA) who is currently receiving the drug Spinraza. Khrystal is an author, coach, speaker and patient advocate who helps rare disease patients and caregivers become empowered advocates. Doctors diagnosed her son Hunter with Spinal Muscular Atrophy (SMA), a rare and terminal disease, at eight weeks of age. SMA is similar to ALS in babies: It robs the ability to move, eat, swallow, and eventually breathe. The doctors told Khrystal and her husband, Curtis, that Hunter would survive an additional three to twelve months, but likely toward the lesser end, due to the severity of his symptoms. Curtis convinced a researcher to help, obtained a chemistry for a potential treatment, and commercially manufactured it. A doctor began administering the treatments to Hunter at sixteen weeks old, just eight weeks after his diagnosis. Hunter was the first SMA patient treated for the disease. He started his treatments before the clinical trial of a similar compound began in the US. Curtis and Khrystal travel to Mexico with Hunter every six weeks for his treatments. In addition to saving Hunter, Curtis and Khrystal arranged for treatments for two other SMA babies. To accomplish this, they overcame surprising obstacles. Khrystal has written a book about raising a child with rare disease, Hunt for a Cure: An Unexpected Adventure to Save a Life. She is currently studying for her MPH from Johns Hopkins University.