December 2021 | Vol. 8 Iss. 12
FREE INTERNATIONAL RARE DISEASE SUPPORT ORGANIZATION HONORS TAYLORSVILLE MOTHER By Carl Fauver | c.fauver@mycityjournals.com
T
he drive from Jamii Stock’s Taylorsville home to Primary Children’s Hospital takes 12 minutes. The fact she knows that number off the top of her head is tragic. Stock, 38, made that drive seven times in less than two years. Each time her youngest daughter, Christa, was with her on the way up. And every time, there was a very real possibility Christa would not be on the ride back. So far, the 4-year-old is a 7–7 round-tripper. Christa suffers from one of more than 7,000 ailments the medical community officially designates a “rare disease.” Since researchers first discovered it in 2006, fewer than 500 people across the globe have been diagnosed with the genetic disorder BPAN (beta-propeller protein assisted neurodegeneration). “In June 2018, when Christa was 18 months old, I was at work and my brother was watching her, when she went into a 20-minute seizure,” Stock said. “After reaching the hospital, she was unconscious for two days, intubated for three and stayed there a full week.” An ambulance rushed Christa to the hospital that first time. Jamii’s seven life-or-death drives to Primary occurred between August 2018 and July 2020. Although it’s been nearly a year-and-a-half since her last emergency, Christa’s next always looms just around the corner. “[Because BPAN is such a rare disorder], we did not have an official diagnosis for nearly two years after that first seizure,” Stock said. “At first, our neurologist thought it might be Continued page 6
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A rare disease has made life a constant challenge for Jamii Stock and her daughter Christa. (Courtesy Jamii Stock)
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