Before he got his death sentence, Tom Kirchhoff was on top of the world.
He had a happy and healthy family with four kids and wife Staci. He was an executive of a successful business, Cleveland Brothers Equipment Co., and a former NFL player with the Philadelphia Eagles.
Kirchhoff was fully realizing the American dream.
Then came the diagnosis.
In September 2010, Kirchhoff’s world would get rocked monumentally when he was diagnosed with Amyotrophic Lateral Sclerosis, orA.L.S., commonly known as Lou Gehrig’s Disease.
Currently, a recovery is impossible. After slowly but surely atrophying his muscles and functionality, Kirchhoff’s A.L.S. will end his life sooner rather than later, as the expected life span after diagnosis is about two-to-five years.
And that’s just about where the sob story ends.
Kirchhoff’s tale is not one of a dying man counting the minutes until life’s final bell tolls. Rather, this is a story of a inspirationally optimistic family living in the moment, of a Penn State commit’s promise that “we will win,” and of a bond forged through football that is making what could be a hopelessly bleak situation a promising one.
Adam Breneman and Tom Kirchhoff: “Catching the cure.”
‘Devastating’
Kirchhoff struggled to speak during the phone interview for this story. His words were slurred, his breath short.
The decaying of Kirchhoff’s ability to speak is just one of the things his A.L.S. has taken from him.
“It was devastating to hear those words,” Kirchhoff, only 41 years of age, said of his diagnosis. “…When you first hear that diagnosis, you end up thinking the worst.”
According to Dr. Neil Shneider, M.D., Ph.D, an attending physician at Columbia University who works with A.L.S. patients, the disease, which affects motor neurons, is sporadic in 90 percent of cases, meaning that it can affect anyone.
“The muscles require the neurons to stay firm and toned and to maintain their bulk,” Shneider said. “…So the first thing that happens in the process [of A.L.S.] is that it draws its wire, its axon, the connection to the muscle, is lost and when that happens, the muscle atrophies and becomes weak.”
As such, Kirchhoff’s speech, strength and breathing have been aversely affected by the ailment. He needs to be connected to a device known as a BiPAP machine for 18 to 20 hours a day so that he can breathe properly.
“I have a big challenge communicating. My voice is just tired. My words are slurred, obviously. And the biggest issue with me is my breathing,” Kirchhoff said. “Essentially, the muscles in my diaphragm are gone, so breathing for me is a very difficult thing. My left hand is weak, and it’s getting weaker. I’m losing my ability to walk, because my left leg and my muscles don’t work as well as they used to.”
Kirchhoff’s diagnosis was awful enough news in itself.
But six months later, it was tragedy all over again, when Staci, 38, was diagnosed with Stage III Melanoma, a very dangerous form of skin cancer. She said she went through a radical surgery and needed daily infusions of chemotherapy for six weeks to get healthy.
The diseased parents have four children: Tommy, 12; Sam, 10; Brynley, 8; and Ty, 6.
Fortunately, Staci’s disease is not terminal, but it is still a part of the Kirchhoff life.
So how does the family manage to lead a normal life knowing that their father will die within a few years and their mother has a form of cancer?
“With all of these things happening, keeping it normal for our kids by going skiing and doing all the things they’re used to doing, you just try to make the disease a small part of our lives,” Staci said. “The disease does not define us, it’s just a small part of our life. When you stop and think about it, it’s very difficult, but when you’re in the every day life, you just keep going. You grab dad’s breathing machine and you head out the door.”
Despite such overwhelming diagnoses, both Tom and Staci were almost shockingly positive when they discussed their situations in interviews.
Why? How?
“It is what it is,” Staci explained. “You can choose to wallow or be stuck in your bed and be miserable, or you can go out and live your life and be happy and be positive and not let the disease sort of define what happens from here on out.
“You get to decide what happens with your life.”
Reaching out
Adam Breneman has a lot on his plate right now.
The prized tight end recruit, who committed to Penn State in March, tore his right anterior cruciate ligament in June during an otherwise routine play that will sideline him for his senior season until he enrolls early at Penn State in January 2013.
To make matters worse, the NCAA slammed his future school with unprecedented sanctions on Monday that, among other things, won’t allow him to play in any postseason or bowl games until his senior year, unless he redshirts.
But Breneman, a five-star recruit, is still finding time for his partnership with Project A.L.S., an organization dedicated to fighting A.L.S., which he has dubbed “Catch the Cure,” to help Kirchhoff and victims of the disease.
“It hit pretty close to me,” Breneman said of Kirchhoff’s disease. “Getting the chance to talk to him and having my injury, seeing him fight through all of this while knowing he’s gonna die in a few years has really motivated me.”
Breneman, who has been praised for his upbeat demeanor just as much as his ability to play football, knew Kirchhoff because he coached his brother, Grant, in pee wee football.
The Brenemans and Kirchhoffs are also neighbors, and Kirchhoff is a 1989 graduate of Cedar Cliff High School where Adam currently attends. Kirchhoff went on to play quarterback at Lafayette College, and now has the ninth-most passing touchdowns in Patriot League history. He is set to be inducted into the Lafayette College Sports Hall of Fame in November 2012.
Adam said he has gotten to know Kirchhoff a lot better recently, and seeing the family fighting through the unfortunate circumstances has been an inspiration to him.
So, Breneman decided he’d take matters into his own hands. In May, he reached out to Project A.L.S. with an idea.
“He came to us out of the blue,” said Erin Fleming, creative associate at Project A.L.S. “Tom has been involved with Project A.L.S. for a few years now, and I think it was just Adam wanting to do something good, you know, for an organization that did something for [Tom].”
Breneman created his own website, catch-the-cure.com, where anyone can go and donate. To create awareness, he also sent out a mass text to members of the media that he knew to promote the fundraising efforts.
His initial goal for the project, which he officially launched on July 16, was to raise $20,000.
He accomplished it.
In two days.
“I think he had higher expectations [for Catch the Cure] than we did. A lot of people who have good intentions come to Project A.L.S. with a good idea for how they can raise money,” Fleming said, “but there’s not anyone for as long as I’ve been here in the past year or so that has put as much time and effort into it as Adam has. He built his own website and was always pushing us along instead of the other way around.”
Kirchhoff said while he was on vacation with his family in their condominium in Park City, Utah, the text messages started to flow in with updates on how much money had been raised. Kirchhoff said he never doubted they’d reach the initial goal of $20,000, and he saw some donors on the list that were old friends from 20 years ago.
According to a press release from Catch the Cure, the Kirchhoff family will match $25,000 in donations of however much Catch the Cure raises, and Kirchhoff’s company will match the total amount.
As of press time Thursday, Catch the Cure had raised $28,225. Breneman’s new goal is to reach $50,000.
“He started thinking about this two years ago,” Breneman’s mother Sherri said. “He’s the one that’s kept pushing it. I’ve had to do some legwork with adults, but it’s just amazing that he’s really even thought of doing something like this. You try to teach your kids to think of other people, but he took this on himself.”
Living in the moment
“Every month I notice I’m a little less able to do things,” says Kirchhoff. “So there is a challenge, knowing what the future holds for me.”
That said, Kirchhoff was more interested in praising those who have helped him than bemoaning his situation.
“When [Adam] was all busy with football and Penn State, he took the time through a very hectic football schedule to not focus on football,” Kirchhoff said. “It speaks volumes about his character and what kind of person he is to me.”
On catch-the-cure.com, there is a video of Breneman and Kirchhoff together. In it, the two have a football catch, which Breneman later said was “neat” since Kirchhoff’s left hand is now very weak. The website also links to Breneman’s Twitter account, through which he has promoted his movement to almost 6,200 followers.
Breneman has taken the “We will win” mantra, which the website says was taken by Kirchhoff’s friend Mike McElrath, very seriously.
Still, everyone involved in the mission knows how tough the situation is.
Dr. Shneider said A.L.S. is maddeningly difficult to cure.
“Well, it’s complex, like everything in the nervous system,” Schneider explained. “There aren’t too many, you might even say there are no, degenerative diseases of the nervous system that are curable. I mean, go down the list: Alzheimer’s, Parkinson’s, Huntington’s, A.L.S. They’re all incurable diseases, so its not that surprising, I guess, that A.L.S. is not cured in 2012.
“There’s lots of approaches, but it’s hard to say which one will win.”
He said some sort of causal signature is needed before nervous system diseases such as A.L.S. can begin to be cured.
So for Kirchhoff, the man who once lived without the finish line breathing down his neck, the solution to living a life as normally as possible is simple: Treat every single day as a gift.
“It’s surely more of a curse than a blessing. However, right now, every day, every game that I go to with my kids really is a gift. To think, two years ago, I was living a very normal life,” Kirchhoff said. “It has made me appreciate everything that I do now. By no means is there anything good about this disease, but it’s really allowed me to step back and enjoy every day I live with my kids, because nothing comes easy. Just stay in the moment and enjoy each day.”
It may be quite some time before a cure for nervous system diseases such as A.L.S. is found.
But one would still be hard-pressed not to find inspiration in the story of Breneman and Kirchhoff.
Staci said her kids look at Adam as a role model.
And now, her oldest son, Tommy, has taken a great interest in the science behind A.L.S. research.
Who knows? Maybe he’ll make a difference someday.
“I sure hope so,” Staci said.
