Utah cyclist diagnosed with aggressive ALS to compete in Ironman World Championships

FARMINGTON, Utah — An elite cyclist from Farmington is dying from an aggressive, rare form of ALS  — also known as Lou Gehrig’s Disease — and doctors have told him he only has 6 to 18 months to live.

But that’s not stopping him from living, Kyle Brown is vowing to use what time he has left to train for and finish the Ironman 70.3 World Championship race on September 18th, in St. George.  

“I’m okay,” Brown said choking back tears while he shared his story on a podcast made by members of The Church of Jesus-Christ of Latter-day Saints called The Cultural Hall. “I know where I’m going. And for me it [death] will be an instant.”

The misdiagnosis 

 

Kyle Brown actually got this devastating diagnosis of Bulbar ALS, twice.

“Amyotrophic lateral sclerosis, or ALS, is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. ALS is often called Lou Gehrig’s disease, after the baseball player who was diagnosed with it,” according to The Mayo Clinic.

When symptoms begin with speech or swallowing problems, as they did for Kyle, it is termed “bulbar onset” ALS. When symptoms begin in the arms or legs, it is referred to as “limb onset” ALS. Bulbar onset ALS is said to be more aggressive than limb onset. 

Kyle’s doctors first told him he had it in March of this year. 

“Doctors said you have Bulbar onset ALS, and we freaked out for like a week. Went to see more doctors and they were like, no way do you have this.”

Kyle is in his early fifties, an elite athlete, in peak physical condition, vegan, and trains for his Ironman six days a week. 

The confirmation

It was months after the initial diagnosis, in July, when doctors reconfirmed to Kyle he did, indeed have Bulbar ALS. Kyle had gone to see his specialist at The University of Utah.

“And he said I’m sorry. The first time you saw me, I was wrong. The original diagnosis was correct.”

The marriage

The same day Kyle was told he was dying, he proposed to his girlfriend, Colleen. And they were married in less than 3 weeks. It was an emotional ceremony after they biked 3 hours to the top of Francis Peak in Davis County. They were met by over a hundred friends and family.

This is what Kyle said to his bride that day.

 

Hear what Kyle Brown said to his bride at their impromptu wedding atop Francis Peak. They were engaged 3 wks cuz he’s been diagnosed w/Bulbar #ALS, given 6 to 18 months. Now, he’s training 4 @IRONMANtri 70.3 World Championships in St. George Sept 18. More today on @kslnewsradio💕 pic.twitter.com/6y07jFIyQQ

— Lindsay Aerts (@LindsayOnAir) August 25, 2021

The Training

Now, Kyle is training 6 days a week to compete in the Ironman 70.3 World Championships on September 18th in St. George.

He swims close to shore at Pineview Reservoir to train because doctors have told him his throat could close while he’s in the water.

The Ironman is one of the most physically taxing races out there, both mentally and physically. The 70.3 has a swim that is 1.2 miles, the bike is 56 miles, and the run is a half marathon or 13.1 miles.

But Kyle has vowed to finish, not knowing if this race will be his last. 

“Oh I’ll finish,” he said. “If it kills me.” 

The special number

Kyle will be wearing a special number when he competes in the race in a few weeks. 

Number 179.

That was the number of Jon Blais, also known as Blazeman, who was the only other man with ALS to start and finish an Iron Man. He has since passed away. He is the namesake of The Blazeman Foundation for ALS reasarch.

“[Jon] crossed the finish line by log-rolling over it, and since then, the “log roll” has been graciously performed by countless athletes as a symbol of hope, and more importantly, as a means of raising awareness for ALS,” according to the foundation’s website.

Kyle said Blais’ parents have asked him to wear the number, and have gotten special permission from Ironman for him to do that. 

The support

Kyle said his friends and family have been the biggest support. He has one son, and his new wife also has four kids. 

His friends have set up a Gofundme, without his knowledge, to raise money so he and his new bride can make memories while he still has time.

Kyle also coaches the mountain bike team at Davis High School. This weekend, the entire team will be sporting “Team Kyle” tattoos at their first race of the season.

“That is a big thing that keeps me going. We’ve become really close over this and they get me through many days.” Kyle said. 

 

 

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