Joaquin Niemann’s generosity helps family facing long odds

Before the week began at The RSM Classic, Joaquin Niemann pledged the entirety of this week’s winnings — as well as an additional $5,000 for every birdie and $10,000 for every eagle — toward a costly infusion that his one-month-old cousin will need in order to survive. Niemann earned $136,450 toward the cause, an admirable sum that drew the family closer to its ultimate goal. The only problem is that Niemann and his relatives need more than $2 million in total for the coveted medicine they so desperately require. This is the stark reality that faces Niemann and his family, who are in a race against time to save the life of Rafita Calderon, whose father, Felipe, is the cousin of Niemann’s mother. Rafita, born on Oct. 21 in Talcahuano, Chile, was recently diagnosed with Spinal Muscular Atrophy, which essentially is a breakdown of the nerve cells in the brain and spinal cord. It is one of the leading genetic causes of infant death. “I’m just thinking about him,” an emotional Niemann said Saturday, after taking a minute to compose himself. “I love him and his family, they’re really nice. It’s sad to see things like this happen. So it’s kind of like a mission for me to help out for them. They’ve been so nice to me since I grew up, since I was a kid, so I just feel good by helping back.” A week after his birth, doctors discovered Rafita was battling hypotonia, or low muscle tone, which led to a series of consultations and tests until specialists eventually determined his diagnosis. The rare disease — which affects roughly 1 in every 6,000 to 10,000 babies, according to the Cleveland Clinic — can lead to difficulty moving, eating, breathing and swallowing. Luckily, there are solutions available that can save Rafita. But the price tag is significant. “When they told me he was going to have a really bad disease, I didn’t realize what it was,” Niemann admitted. “I didn’t put much attention on it, and then a couple days go on, they tell us the bad news, and that this medicine was this much amount of money.” Only palliative treatments that would delay the advance of the disease existed until last year, when a game-changing drug known as Zolgensma first entered the market. Available predominantly in the United States and Europe, the one-time injection — which was approved by the FDA in 2019 — is billed as the best treatment yet to give children a chance at a normal life. Naturally, this scientific breakthrough comes at a steep cost — $2.1 million, to be exact, according to the Calderon family. Making matters even more complicated, it is only available to children under 2 years old. Rafita’s parents say that the best possible outcome for his well-being would be to receive the drug before he turns 100 days old. Time is of the essence. “After they told me that news,” he added, “I probably seemed like I was going crazy. Like, what can I do to help out?” The answer lied in both Niemann’s own financial contributions and the desperate plea for aid he and his family have begun in both Chile and in the United States. In addition to this week’s contributions, the 22-year-old superstar will again donate his earnings from the Mayakoba Golf Classic presented by UNIFIN to the cause. He will continue donating $5,000 for every birdie and $10,000 for every eagle. Back in Chile, the family’s situation has garnered national media coverage, and professional soccer players have also pledged to donate for the cure, Niemann said. More is sure to be required. As such, the one-time PGA TOUR winner and Presidents Cup member is anxious to spread the story amongst his fellow peers on Tour and the fans that follow him. The family has launched a campaign, #SALVEMOSARAFITA, to raise money for the cure. In the U.S., Niemann has started a GoFundMe page that fans can donate to here, which through Sunday afternoon had raised more than $47,000 “If I’m able to help,” Niemann said, “it would be amazing. It would be a dream come true for me.” And for Rafita.

Click here to read the full article…