HEART OF UTAH

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

Aug 25, 2021, 8:02 AM | Updated: Sep 24, 2021, 2:29 pm

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

Kyle and Colleen’s wedding party after they rode their bikes to the top of Francis Peak.
(Lindsay Aerts)

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.

 

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. 

 

 

 
*KSL NewsRadio does not assure that the money deposited to the account directly benefits the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisers and otherwise proceed at your own risk.

Today’s Top Stories

Heart of Utah

The very first ever Miss Volunteer America is Mapleton, Utah's own Alexa Knutzer. Photo courtesy of...
Mark Jackson

Mapleton woman crowned first-ever ‘Miss Volunteer America’

Alexa Knutzen said the name Miss Volunteer America represents the organization's new focus on women's empowerment.
2 months ago
refugees Ukraine...
Mark Jackson

Brigham City man uses time between work gigs to help refugees in Ukraine

His family says Solomon Smith is uniquely trained to bring supplies to refugees in Ukraine, after having worked in the Peace Corp in Africa.
3 months ago
Spencer Truman st george wwii veteran...
Simone Seikaly

St. George WWII veteran celebrates 100th birthday on Valentine’s Day

Spencer Truman was trained to enter combat in gliders, and fought in Operations Overlord and Market Garden, and the Battle of the Bulge.
4 months ago
afghan community fund helps refugees arriving in utah - small boy holds drawing...
Becky Bruce

Update: Afghan Community Fund raises more than a million for Utah refugees

The Afghan Community Fund collected more than $1.1 million since mid-October, though Gov. Spencer Cox acknowledged an unprecedented level of need.
6 months ago
Sarah Pugliese...
Curt Gresseth

Pandemic can’t stop Topaz Fairy on her mission to spread joy

As a special friend to abused and traumatized children across the country, the Topaz Fairy -- who is also a graduate student at the University of Utah -- was determined not to be derailed in her mission of joy by the pandemic.
7 months ago
...
Amber Gentry

Volunteers of America has resources for homeless youth

SALT LAKE CITY — Thousands of Utah’s homeless youth are not only facing hunger, but are experiencing homelessness. Volunteers of America is a program that aims to promote and spread awareness for the more vulnerable people in our community.   As a part of Utah Gives Back presented by Select Health, The Director of Youth […]
7 months ago

Sponsored Articles

Tax Harassment...
Jordan Wilcox

The best strategies for dealing with IRS tax harassment | You have options!

Learn how to deal with IRS tax harassment. This guide will teach you how to stop IRS phone calls and letters, and how to handle an IRS audit.
spend a day at Bear Lake...
Bear Lake Convention and Visitors Bureau

You’ll love spending the day at Bear Lake | How to spend a day at Bear Lake

Bear Lake is a place that needs to be experienced. Spend a day at Bear Lake.
Curb Appeal...
Price's Guaranteed Doors

How to have the best of both worlds for your house | Home security and curb appeal

Protect your home and improve its curb appeal with the latest security solutions like beautiful garage doors and increased security systems.
Prescription opioids can be disposed of during National Prescription Take Back Day...
Know Your Script

Prescription opioid misuse | How to protect your family from the opioid epidemic

Studies have shown that prescription opioid misuse has increased since COVID-19. So what do you need to know about these opioids?
Follow @ikeyospe...

Tax Tuesday: The Most Common Mistakes People Make When Filing Their Taxes

Fortunately, for most average earners, they will not end up owing overpayments received for the Child Tax Credit in 2021.
Follow @ikeyospe...

Tax Tuesday: How will last year’s child tax credits affect you?

Fortunately, for most average earners, they will not end up owing overpayments received for the Child Tax Credit in 2021.
Utah cyclist diagnosed with aggressive ALS to compete in Ironman World Championships