ALS Heroes: John Kennedy
As a part of Major League Baseball’s inaugural celebration of Lou Gehrig Day on June 2, Marquee Sports Network is proud to work with Project Main St. and the Chicago Cubs to share the stories of ALS heroes. These heroes have taken on the illness with strength, hope and determination – eager to raise awareness and funds so that ALS can finally be defeated. For more information on Project Main St. and to make a donation to help these heroes and others being inflicted with the disease, please visit https://projectmainst.org/about-us/.
A rainy day at the ballpark can lead to early exits, even for the most diehard of fans. But for John Kennedy and his now wife, Martha, visiting Chicago on their first-ever trip as a couple, there was no doubt that they were staying at Wrigley Field until the final out.
Just months shy of getting married, John and Martha took in all the sights of Chicago during the weekend excursion – riding the el, boating down the Chicago river, but of course the highlight, and purpose for the trip, was visiting the ballpark of one of John’s favorite teams, the Chicago Cubs.
Like many, John grew up watching the Cubs on television and visited Wrigley Field as a child with his dad. Being able to attend the game with Martha as the Cubs faced the White Sox during a summer weekend in 2010 was a dream come true, despite dodging the rain drops throughout the game.
“He says he knew he loved me when I stayed despite the rain,” Martha said.
A few months later on October 30, John and Martha were married.
However, the newlywed couple was in for a challenge that no couple can ever be prepared for when just a few months later, John was diagnosed with ALS.
“We were married four months and had a baby on the way, and we were just really shocked that something like this would happen so young, and of course denied it for a long time, trying to think it could be anything else,” said Martha. “But then you just learn to live day to day and enjoy what you have. That’s our motto, we just live in the moment.”
More than 10 years removed now from the diagnosis, John can no longer walk, talk or eat, but his mind is 100% and he can communicate through a text-to-talk communication app.
“There’s a part of this disease that is mentally taxing, especially when you lose your voice. I have definitely learned to be patient with yourself and everyone around you. At least I try, my wife will probably disagree, but I have tried. In that same sense, it’s extremely important to be thankful for a lot of the little things in life and to slow down and enjoy the people around you such as friends and family.”
John and Martha are certainly thankful for their two daughters – Ellie Claire, age 10, and Mary Alice, age 7, both of whom shine a light in the household on the darkest days.
“The girls are definitely his inspiration for going on because they are so funny and sweet, and they make him laugh constantly. They’re good kids and they just want to have fun with Dad,” said Martha.
One of the ways they have fun together is John chasing the girls around the house in his power wheelchair, which the family was able to purchase thanks to a grant from Project Main St. John says that he owes so much to the organization for what they have done for his family.
“Project Main St. has been incredible. I’m rarely at a loss for words but I couldn’t find the right adjective to say how much Project Main St. has meant to my family. There was no way we could have afforded the power chair without their help.”
“Within a week, Project Main St. reached out and helped us. John had not been able to walk for two years and he was either using a manual wheelchair or just sitting in his chair. He had no way of getting around and he hadn’t seen rooms of our house in a long time,” Martha said. “The first time he moved around in the power chair, the girls were beyond excited. They like to sit in his lap, he’s able to come outside into the backyard. Project Main St. really made that possible for us.”
With ALS, the push for awareness and increased funding is still an urgent matter for everyone fighting the disease and the Kennedy family is hopeful that Major League Baseball’s Lou Gehrig Day will be an impetus for increased exposure for the disease.
“I think its outstanding. The fact that MLB would devote an entire day to it is a great start. I say great start because there’s a lot of work to be done,” John said.
Martha adds about fighting ALS, “It’s a disease that debilitates someone completely. It affects our whole family. Our oldest daughter was born when he started having symptoms. So, they’ve never known him any other way. Not being able to talk and walk, and they don’t remember his voice. So, this is a disease that slowly takes everything from you.”
“People don’t know how hard people fight to stay alive with this disease, it’s so easy to give up. John has never not gotten out of bed. It’s been a hard 10 years, a really long time, and we hope through Major League Baseball and Project Main St. and bringing awareness to this, that people will know that it’s a struggle and there are so many ways we can make it easier for people to live with this disease and to find a cure.”
And while the progress to finding a cure has been slow, John remains optimistic, because for him, there is just no other way to approach each day.
“When I started typing I was prepared to say that I was not optimistic about the progress that has been made, but to keep fighting this well you honestly just can’t have that type of attitude. So yes, absolutely I am optimistic about the progress that has been made, and I look forward to the progress that will be made because of Major League Baseball taking a day to highlight the progress that has been made.”
While John knows ALS might take away some of the moments he was looking forward to most, such as walking his daughters down the aisle at their weddings, he also knows that what’s important right now is embracing their family motto and living in the moment.
“Hopefully people will know that I am a good dad. I have learned that people rush through too much and that people need to slow down and take time for your family and for others.”