Joaquin Niemann is a man on a mission and it’s a very, very noble cause.
Niemann, one of the rising young stars on the PGA Tour has a one-month-old cousin back in his hometown of Santiago (Chile) and little Rafita Calderon is in a struggle for his life in a hospital. The baby was diagnosed with a rare neuromuscular disease called spinal muscular atrophy.
“He needs the most expensive medicine ever,” Niemann said last week at the RSM Classic. “He’s got 100 days to get the medicine.”
That medicine is called Zolgensma, and it is designed to combat the debilitating and often fatal muscle weakness associated with SMA. The disease affects about one in 1,000 babies each year and has an average life expectancy of just two years. A single intravenous injection of the gene-therapy drug, which was approved by the FDA last year, can drastically improve the survival rate and quality of life for those suffering from the disease.
However, the potentially life-saving treatment also costs $2.1 million. That price tag is basically 33 times the national per capita income in Chile. It is too expensive for Calderon’s family and not covered by insurance. Bad news is it must be administered in the baby’s first 100 days of life in order to be most effective.
“When they told me (Rafita) was going to have a really bad disease, I didn’t realize what it was,” said Niemann, who grew up playing golf with Calderon’s father, Felipe, who also is the cousin of Niemann’s mom. “I didn’t put much attention on it, and 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?’”
As fundraising efforts stretched across Chile and around the world with help from news outlets, social media and even some Chilean professional soccer players, Niemann last week called out to the golf community for help. He announced on Instagram that he would be donating his prize money from the RSM Classic and next week’s Mayakoba Classic, plus $5,000 for every birdie and $10,000 for every eagle, to the Calderon family. A GoFundMe page has already raised more than $50,000.
While Niemann’s 21 birdies, one eagle and T-44 finish at Sea Island netted $152,450, it was but a small dent in the lofty goal.
“This diagnosis has been the most devastating and heartbreaking news for us,” Calderon’s parents wrote online. “However, we will stand up and fight every day because our dear son needs us. Rafa is fighting every day to survive and we will do everything possible for him. We cannot do this on our own, so to save Rafita’s life, we need each one of you to get Zolgensma and make this miracle happen.”
First place at the Mayakoba Open is worth $1.296 million. Niemann has his eyes on the prize.
“If I’m able to help, it would be amazing,” Niemann said. “It would be a dream for me come true.”