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Utah man competes in Ironman World Championship after ALS diagnosis

Sep 28, 2021, 12:09 AM | Updated: 10:05 am

ST. GEORGE, Utah — An elite cyclist from Farmington finished a half Ironman he vowed to compete in last month after he found out he had an aggressive and terminal form of ALS.

Kyle Brown has been diagnosed with Bulbar ALS, and he just completed the Ironman 70.3 World Championships in a time of 5:38:35.

The race was held in St. George on Sept. 18.

“You know, to experience this, and especially with this support group behind me, I hate to say this, but I can die happy, I really can,” Brown said just after he crossed the finish line.

The misdiagnosis 

Kyle Brown actually got the 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 Brown, 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.

Brown’s doctors first told him he had it in March 2021.

“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,” he said.

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

The confirmation

At least six doctors told him there was no way he could have the disease.

It was months after that, in July, when doctors reconfirmed to Brown he did, indeed have Bulbar ALS.

He 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,'” said Brown.

During that time, Brown had actually raced and qualified for September’s Ironman.

The marriage

The same day it was confirmed to Brown that he was indeed dying, he proposed to his girlfriend, Colleen.

They were married in less than three weeks.

It was an emotional ceremony after they biked three hours to the top of Francis Peak in Davis County, where they were met by more than 100 friends and family.

Brown shared tender words with his bride that day.

Race day

As the sun rose over Sand Hollow Reservoir on that mid-September race day morning, emotions were high for Brown, before the race even started.

He’s already been on a journey just to get to this point.

“You can’t hide behind someone and draft. You ride an uncomfortable bike, and you run like you stole and the cops are behind ya, and that’s after you swam a long ways,” he said, describing how different an Ironman is from a cycling race.

As he took off for the 1.2-mile swim, he struggled.

His family nervously watched from the shores of Sand Hollow Reservoir as he started choking after stopping early in the swim.

“I was throwing up the whole time — in the water, on the bike — and it was affecting my stomach,” said Brown.

But, he was determined. He had plans to do a log roll over the finish line, and nothing would stop him.

His log roll was to honor a fellow triathlete named Jon Blais, who died from ALS.

The Jon Blais connection

Blais is the only man to complete a full Ironman with ALS.

He was the originator of that roll over the finish line.

Triathletes still honor him by doing it. It’s now known as the Blazeman roll.

“His doctors said, ‘If you’re going to do it, they’re going to have to roll you across the finish line.’ So he said, ‘Alright,'” said Brown, fighting back tears. “So, he finished it.”

Blais stopped right in front of the finish line, laid down and rolled across.

That’s what Brown planned to do while wearing his number.  

The bike and run

Brown made it out of the water. Then, it was a 56-mile bike ride through the grueling red rocks of St. George.

With each mile, he grew wearier. Biking, however, is in his blood.

“It’s my true calling in life, I guess,” he said.

And finally, the run — 13.1 miles.

The last 100 meters, Brown said his legs were cramping.

“I don’t know if I can do this anymore, that about killed me,” he said. “And I don’t need help.”

The finish

As Brown approached the massive Ironman black carpet and archway, party music blaring in the background, he got about two feet from the finish line, got down on all fours, and log rolled. His very own, Blazeman roll.

He then buried his head in his hands and sobbed.

“I got there and it all hit me,” he said, crying. “Just overwhelmed.”

Not only did Brown finish the race, he gained support from fans, strangers, and other athletes along the way who heard his story while at the race.

After the race, Brown held up a white flag with black lettering.

“It’s too late for me but not for someone you love, the cure for ALS is close,” it read.

Final race day message

Brown’s final message on race day: go out and live.

“Don’t waste time. Do somethin’ crazy and stupid, do something you love because you don’t know what could happen tomorrow,” he said.

When you’re faced with tragedy, he said, you can come alive, or you can come undone.

“I hate to say this, but I can die happy. I really can. I’m not lacking anything. I haven’t missed out on a thing,” he said.

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Utah man competes in Ironman World Championship after ALS diagnosis