HARTFORD, Conn. – Golf is the world’s No. 1 sport when it comes to charity. Last year, the PGA Tour surpassed $3 BILLION in donations around the world, including more than $40 million that the PGA Tour’s annual stop in Connecticut has provided to folks in the Nutmeg State.
Joaquin Niemann is the latest to make a sizable gift to someone else. The 22-year-old Chilean missed the Masters last week after testing positive for COVID-19, and while that might seem a terrible twist of fate, he’s dealing with a much graver medical concern.
Niemann’s one-month-old cousin, Rafita Calderon, was diagnosed with Spinal Muscular Atrophy, a rare genetic disease that essentially is a breakdown of the nerve cells in the brain and spinal cord that affects about one in 10,000 babies born each year. Calderon is battling for his life, desperately needing a one-time injection of Zolgensma, a drug that Niemann said costs $2.1 million.
Calderon is at a medical center in Santiago, Chile, five hours from where the family lives, awaiting treatment for the disease that is among the leading generic causes of infant death.
“When they told me that [Rafita] 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. “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?’ ”
In an Instagram post last week, Niemann committed to donate all of his earnings, plus $5,000 for every birdie and $10,000 for every eagle, in the RSM Classic and the Mayakoba Golf Classic to help fund the medical bills for Rafita. He raised $152,450 when he had one eagle and 21 birdies while shooting 8-under-par 274 to tie for 44th Sunday in the RSM Classic in Sea Island, Ga. The Mayakoba Golf Classic is Dec. 3-6 at El Camaleon Golf Club in Playa del Carmen, Mexico.
“This week I am playing for something bigger,” Niemann posted. “You may have seen me post about Rafita, a 20-day old baby that is battling for his life fighting a rare disease called SMA. Spinal Muscular Atrophy symptoms are often seen when babies are first born. They have weak muscle tone and trouble breathing, eating and swallowing. Unfortunately, the only cure is $2.1 million (USD). I will be donating all of my earnings this week and next to help save his life, as well as pledging $10,000 for every eagle, $5,000 for every birdie.”
Ratifa was born on Oct. 21 in Talcahuano, Chile, and his father, Felipe, is the cousin of Niemann’s mother.
“I’m just thinking about him,” an emotional Niemann said Saturday after taking a moment 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 can lead to difficulty moving, eating, breathing and swallowing.
Fortunately, there are solutions available that can save Rafita, but the price tag is significant. 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 to give children a chance at a normal life.
Besides the steep cost, the medication is only available to children under 2 years old. Rafita’s parents say the best possible outcome for his well-being would be to receive the drug before he turns 100 days old, so time is of the essence.
Besides Niemann’s own financial contributions, he and his family have begun a desperate plea for aid in Chile and the United States. Besides contributions of his earnings and for birdies and eagles in the Mayakoba Golf Classic, the family’s situation has garnered national media coverage in Chile and professional soccer players have pledged to donate for the cure. It could get more notoriety after reigning FedExCup champion, No. 1-ranked Masters and Travelers Championship winner Dustin Johnson committed to the tournament and will make his first career appearance at Mexico’s pioneering PGA Tour event.
“The entire Mayakoba family is thrilled to be able to welcome Dustin Johnson to the Riviera Maya in just one month’s time,” Mayakoba Golf Classic tournament director said. “In a year that has been challenging in so many ways, we are honored to be the final official PGA Tour event of the calendar year and so excited to have Dustin join us so that we can close out 2020 in style here at El Camaleón.”
Niemann, who won the Military Tribute at The Greenbriar and was a member of the International team in the Presidents Cup in 2019, plans to spread the story among his PGA Tour peers and the fans that follow him. The family has launched a campaign, #SALVEMOSARAFITA, to raise money, and Niemann has started a GoFundMe page in the United States that fans can donate to #SalvemosARafita, which had raised more than $52,000.
“If I’m able to help,” Niemann said, “it would be amazing. It would be a dream come true for me.”
A dream come true, too, for Rafita. Congratulations, Joaquin, on emphatically adding to golf’s never-ending gifts to those most in need.