Why We Walk for ALS: 'He remains positive and continually inspires all of us'

  • Hugh Stott of West Chicago is surrounded by his family, who will take part in the Les Turner ALS Foundation's Strike Out ALS 5K and 1 Mile Run, Walk & Roll. Hugh was diagnosed with ALS in January 2020.

    Hugh Stott of West Chicago is surrounded by his family, who will take part in the Les Turner ALS Foundation's Strike Out ALS 5K and 1 Mile Run, Walk & Roll. Hugh was diagnosed with ALS in January 2020. Courtesy Tina Mitchell

 
By Kristen Stott
Posted7/9/2020 6:00 AM

Being a successful firefighter requires bravery, adaptability, perseverance and strength.

My dad, Hugh Stott, spent more than 40 years in the fire services field before retiring in June of 2019 as Deputy Chief of the West Chicago Fire Protection District.

                                                                                                                                                                                                                       
 

He was passionate about mentoring and educating others, which he was able to do as a longtime instructor with the University of Illinois Fire Service Institute and a contributor to Fire Engineering magazine.

Today, as he battles ALS, I can see how the courage and determination used in his professional life are helpful in managing this awful disease, which impacts every aspect of his personal life.

In the summer of 2019, my dad started experiencing a loss of balance, changes in speech and joint pain in his extremities. After several tests and unanswered questions, he was referred to the Les Turner ALS Center at Northwestern Medicine.

Hugh Stott of West Chicago with his wife, Karen. Hugh, a former firefighter, was diagnosed with ALS in January 2020.
Hugh Stott of West Chicago with his wife, Karen. Hugh, a former firefighter, was diagnosed with ALS in January 2020. - Courtesy Tina Mitchell
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In January 2020, he was diagnosed with ALS, a terminal, progressive disease that causes muscle weakness, difficulty speaking and swallowing and, generally, complete paralysis.

As the disease has progressed, it has been difficult to watch my dad's health decline. He has lost the ability to stand and walk, and his hand muscles have weakened, making daily tasks difficult.

Despite these changes, he remains positive and continually inspires all of us. I also see my mom, Karen, draw on her own inner strength to fulfill her role of primary caregiver.

As a way to honor our dad and support the Les Turner ALS Foundation, my brother Kevin and I have been recruiting friends and family for "Stott's ALStars," a team that is participating in the virtual Strike Out ALS 5K and 1 Mile Run, Walk & Roll.

                                                                                                                                                                                                                       
 

To fundraise, we organized a T-shirt sale and, to date, we have raised more than $6,000 selling shirts. Also, our team has collected additional donations, bringing Stott's ALStars' fundraising total to more $9,400. We have been atop the standings as the event's highest fundraising team for weeks.

Hugh Stott spent more than 40 years in the fire services field before retiring in June of 2019 as Deputy Chief of the West Chicago Fire Protection District.
Hugh Stott spent more than 40 years in the fire services field before retiring in June of 2019 as Deputy Chief of the West Chicago Fire Protection District. - Courtesy of Kristen Stott

My dad is feeling the love from everyone who has contributed to Stott's ALStars, and also those who have called and visited our family during a difficult time. We are honored by the response we're receiving from friends, family, co-workers and the firefighter community.

It's rewarding to give back to an organization that is providing us with support and guidance as we navigate the unknowns of ALS. Members of the Les Turner ALS Foundation support services team have met with my parents through telehealth sessions and the foundation has loaned us equipment.

Members of our team will run or walk either the 5K or 1 mile distance in their own neighborhoods between now and the date of the virtual event, July 16.

For more information, visit strikeoutals5k.org. To donate directly to Stott's ALStars, search for their team name on the website and complete the online form.

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