William Flaherty competed in both the men’s slalom and giant slalom at the 2022 Winter Olympics February in Beijing, where he notched the third-best finish ever for a Puerto Rican athlete in the Winter Olympics.
But Flaherty’s road to success began with a major hurdle: When he was 3 years old, he was diagnosed with hemophagocytic lymphohistiocytosis (HLH), a rare disease with a very low survival rate.
The worst moments
“It was December 31st of 2007,” Ann Flaherty, William’s mother, remembered, “and I saw some yellow in the corners of his eyes.”
As a pediatric nurse, Ann knew William’s symptoms meant he likely had liver problems and that she had to act fast.
“We got two potential diagnoses in one night; one of leukemia and one of liver failure,” Ann said. “Right away, they’re asking, ‘Does he have a sibling? Where can we get a liver?’ Basically, he was in the hospital for a week before we got a proper diagnosis.”
When the diagnosis was narrowed down to leukemia or HLH, the doctors told William’s parents to “Pray for cancer.”
“They said, ‘Don’t Google HLH, you’re not going to like what you see,’” Ann said. “Pray for leukemia, because leukemia had at that time an 85 percent cure rate, but HLH had a 10 percent cure rate.”
Flaherty’s parents called in the entire team of doctors for a meeting to outline a plan.
“We asked them to explain, on a scale of 1-10, how sick he was, if one was healthy and going home tomorrow, and 10 is you’re dead,” Ann said. “They gave him a 9.5. That was one of the worst moments.”
Hoping for the best
William’s doctors outlined a plan. First, they would put him on steroids and give him a round of chemotherapy, and if that didn’t work, they would need to perform a bone marrow transplant.
“Through the whole process, he was a happy kid,” Ann said. “But about two days after they started chemo, he started vomiting and couldn’t keep anything down. We had to put a feeding tube up his nose. That was the only time we broke his spirit.”
After the chemotherapy treatment didn’t work, William’s parents had to seriously consider a bone marrow transplant. Luckily, William’s brother Charles was a 100 percent match. William’s bone marrow transplant was a success, but the chemotherapy treatment still impacts his life today.
“I have two-thirds of an immune system because of the chemo,” he said. “The common cold has me in bed for two weeks. Then there are a bunch of bone problems and memory problems.”
Just this year, Flaherty needed surgery to remove a tumor from his jaw.
William’s father Dennis, who recently passed away, became a huge advocate for rare disease awareness after William’s transplant.
“The first thing he did was set up the Center of Excellence at Cincinnati Children’s Hospital,” Ann said. “We did a ton of outreach and started a conference that ran for probably 10 years at Cincinnati Children’s. We would invite doctors from all over the world and pay for their flights and their housing for them to come for a weekend and learn all about HLH.”
Thanks to the Flaherty family’s efforts, there is much more research and awareness in the medical profession for HLH and other rare diseases, including a new treatment that has been approved that would eliminate the necessity for chemotherapy for HLH sufferers.
At 17 years old, William is able to live an active life. He’s also able to keep up with his studies anywhere in the world thanks to Laurel Springs School, an online school.
“Laurel Springs has helped me significantly,” he said, with Ann adding that, “It’s given us the flexibility to travel whenever we need to.”