Chile’s Joaquin Niemann has established himself as one of golf’s most exciting prospects. with a whirlwind of six months on the course for the Santiago native and a series of outstanding results which has seen the 22-year-old break into the world’s top-30 for the first time. It’s events at home in Chile, however, that will define this past year for Niemann.
“My cousin was born in October and in the beginning, it was amazing,” Niemann tells CNN Living Golf’s Shane O’Donoghue. However, joyful video calls home to celebrate the arrival of a new family member were short lived. “After a couple of weeks, we found out that he had a really rare disease … in the beginning, we had no idea what it was and over time, we figured out that it was bad.”
Niemann’s new-born cousin, Rafita Calderon, had been diagnosed with Spinal Muscular Atrophy (SMA), a rare inherited disorder stemming from a defective gene that leads to the death of nerve cells responsible for moving muscles that allow us to walk, talk, breathe and swallow, according to the National Institute of Neurological Disorders and Stroke.
Calderon required a one-time intravenous shot of the gene therapy medicine Zolgensma, labeled “the world’s most expensive drug.”
As many as 1 in 8,000 babies is estimated to be affected by one of the genetic mutations that causes it. That includes about 450 to 500 infants in the US per year, according to a Novartis — the parent company which markets Zolgensma — statement.
The treatment works by replacing a working copy of the defective gene into the nerve cells before they die and symptoms develop.
“We started getting really worried about it and a little desperate because the only medicine and the only cure to help him live for more than two years would cost $2.1 million — we were going out of our minds,” explains Niemann.
“In the beginning we were like: ‘Oh my god, how are we going to do this? How are we going to get the money? Because if we don’t, he’s going to die.'”
With Calderon’s father leading the fundraising efforts in Chile, the country’s best-known golfer set about doing everything he could from his home away from home, the PGA Tour.
“Rafita started getting a lot of attention on social media in Chile and they made a lot of money, but it still wasn’t enough, so I decided to start donating money during golf tournaments,” says Niemann.
Initially donating $5,000 per birdie and $10,000 per eagle on top of the $152,450 he earned at the RSM Classic in November, by the time December’s Mayakoba Classic rolled around, news of Niemann’s fundraising efforts had spread and fellow tour pros including the likes of Justin Thomas and Rickie Fowler could be seen sporting white ribbons in support of the cause.
“To get so much support from the PGA Tour, from the players and on social media was amazing. Now we’re in March and we got the medicine a month ago, it feels amazing to achieve something like that,” said Niemann.
“With one shot he can create the protein to get muscles, he’s doing a lot better now and he can move … so hopefully he’ll be alright,” he says.
With thoughts elsewhere, Niemann could have been forgiven for losing focus on his game in recent months. However, with a series of excellent performances to start the 2021 season including a second place at The Tournament of Champions in January, he’s in the form of his life and has achieved a career-high ranking of 28. [CNN]