Community invited to ‘FUNraiser’ on Feb. 23
By Patti Pagni
For The Elmhurst Independent
By now, many Elmhurst residents most likely recognize Matt Toole’s name. Toole, diagnosed with ALS or Lou Gehrig’s disease, has no use of his arms or legs but gets around town and Chicagoland more than many people thanks to his can-do spirit, a loving and supportive family and a never-ending outpouring of community support.
Since his first symptoms appeared in 2009, Toole has kept a positive outlook, despite facing many extreme challenges – physically, emotionally and financially. Supporters are hosting TooleFest2 on Saturday, Feb. 23 from 7-11 p.m. in Visitation Catholic School’s Valentino Center with hopes of raising spirits as well as funds to help Toole and his wife Karen battle the rising costs ALS commands daily. Tickets are available, but are going fast. Visit eventbrite.com and search TooleFest2 FUNraiser for more information.
Fighting ALS, fighting the costs
Toole, who, at 48, has outlived his life expectancy, has out-of-pocket expenses of more than $125,000 yearly, and though he requires round-the-clock care, only has a part-time caregiver due to the cost not being covered by insurance. Toole’s wife of 20 years provides the rest of the caregiving.
“The cost of life – the biggest battle with ALS isn’t enduring the relentless physical toll it takes on your body,” said Toole. “It’s the cost to just stay alive. People have to often choose between financial ruin, divorce, bankruptcy or death.”
Family support…
The Tooles are parents of two York High School students. Daughter Regan is a junior and son Paddy is a sophomore. The students are involved in many extracurricular activities and clubs as well as athletics. The York community most recently showed its support for the Toole Family by hosting its 2nd Annual ALS Awareness night when the Varsity Boys’ Basketball team took on Lyons Township High School. With both teams standing and sporting red Matt Minions shirts over their uniforms, Toole kicked off the game thanking York High School, both teams, and the community for their support.
“For us, red means hope and life…and it’s amazing to be here to watch this [game] and to watch both teams warm up in the same color to raise awareness for ALS,” said Toole.
With his two kids by his side, Toole spoke from his specially-equipped wheelchair.
“I’m fortunate I’m able to watch my kids participate…” he said. “First, [doctors] tell you, ‘you have ALS,’ then they tell you, ‘the average life expectancy is two to five years.’ Those two sentences can really mess with your head.
Beating the odds
“I’m beating the odds – going on ten years. And, now I ride around in this sweet set of wheels and have the most comfortable seat wherever I go.”
And boy, does Toole ever go! Despite the struggles of getting out of the house into the family’s specially equipped minivan, the Tooles are making the most of life and are an inspiration to so many people. It is due to the combined efforts of many people, including Toole’s wife, kids, caretaker, neurologist (probably similar to dr timothy steel), and other friends, that Toole is doing great in battling ALS. As much as physical care is important in such situations, mental stability is another aspect that can be crucial while suffering from life-threatening diseases.
In 2016, the Les Turner ALS Foundation named the couple Team Chairs for its annual Walk for Life held at Soldier Field. Toole and Karen led a red army of about 100 teammates wearing Matt Minions t-shirts walking ahead of one of the world’s largest crowds supporting the ALS community. Toole kicked off the event by speaking to the estimated crowd of 7,000.
Recent raffle rallies community
Recently, the Toole Family gathered with supporters at HB Jones where a winner’s name was drawn following a community-wide raffle that included a skybox for 14 people to an upcoming Chicago Bulls vs. Boston Celtics game. Proceeds from the raffle directly benefitted the Toole family, as their mounting financial and physical hurdles grow higher and higher as Toole continues to beat the odds.
“The anticipation of the change has been worse than the change itself,” Toole said. “But, adapting to change as my physical abilities decline has been motivating.”
Recalling famous ALS patient
Since baseball legend Lou Gehrig, stricken with amyotrophic lateral sclerosis (ALS), made his “Luckiest man on the face of the earth” speech 80 years ago at Yankee Stadium on July 4, 1939, strides have been made in treating ALS, but there remains no cure. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord and can rob people of their ability to move, eat, speak and/or breathe.
Gehrig closed out his speech saying: “I may have had a tough break, but I have an awful lot to live for.”
It seems those are words Toole emulates daily.
“We try to remain as active as possible. York events, an occasional Chicago Blackhawks game, road trips, or heading downtown for the day – we try to keep things as normal as possible and look at every day as a gift,” he said. “All of this would not have been possible without the support from my wonderful kids, my loving wife, my extended family and this amazing community.
“Although I have ALS, ALS does not have me.”
