SAINT SIMONS ISLAND, Ga. – Joaquin Niemann missed the Masters last week after testing positive for COVID-19. It sounds like a horrible twist of fate until you consider that the 22-year-old Chilean is dealing with graver medical concerns.
Niemann’s one-month-old cousin, Rafita Calderon, was diagnosed with Spinal Muscular Atrophy, a rare genetic disease that affects about one in every 10,000 babies born every year. Calderon is battling for his life, desperately needing a one-time injection of Zolgensma, a drug which according to Niemann costs $2.1 million.
Calderon is at a medical center in Santiago, five hours from where the family lives, awaiting treatment.
“When they told me that is going to have like a really bad disease I didn’t realize what it was, like I didn’t put like much attention on it,” Niemann said of the disease that is the No. 1 genetic cause of infant death. “Then a couple days go on, they tell us the bad news, that this medicine was this much amount of money … I was in my mind going crazy, ‘what can I do to help out?’”