WORCESTER (CBS) - Even the most enduring love stories can't escape challenges. After 37 years of marriage, Jake and Sparky Kennedy are facing the toughest test imaginable in ALS.
Jake is promising to fight the disease. Amyotrophic Lateral Sclerosis--or Lou Gehrig's Disease--attacks the nerve cells in the brain and spinal cord. There is no cure.
Former Boston College baseball player Pete Frates raised the world's awareness of ALS after he was diagnosed at the age of 27. Before he died, the ice bucket challenge Frates helped popularize raised more than $220 million for ALS research. Now, Jake and Sparky Kennedy are launching their own effort. They want to raise $1 million for research at UMass Medical School and, specifically, the lab where ALS researcher Dr. Bob Brown is racing to find treatments for the disease.
Like Jake, Dr. Brown is optimistic. "There are probably 70 drugs in the pipeline for ALS. Only this morning a new drug was shown to be beneficial for people with ALS. It's incredibly exciting for us. I'm sure we'll see a cure. I think we'll first see drugs that slow the disease. And that is a great achievement by itself."
The Kennedys are well-versed in achievement. But their focus is on giving. Thirty years ago, when their kids were little and receiving, in Jake and Sparky's mind, too many Christmas gifts, the Kennedys founded Christmas in the City. The all-volunteer event provides homeless and needy children with toys, clothing and a day of fun at Christmastime.
The effort has expanded to include a "Monday Mania" which includes a clothing giveaway and a chance to give families additional resources. They sponsor a job fair, a neighborhood-based Halloween party and more.
Sparky smiles, "It brings so much joy to us knowing that what we do—and all the people who help us do it—can make someone else happier." 2019's Christmas in the City came seven weeks after Jake's diagnosis. "Everybody's helping ten times more than they usually do."
Jake found out that he carried the ALS gene four years ago. The disease had already claimed his father and his younger brother Jimmy. His brother Rich is battling the disease right now. Jake insists that knowing he carried the gene didn't change the way he lived or worked. A physical therapist with his own practice, he explains, "I love work. I love helping people."
He admits that the toughest part of his ALS diagnosis is accepting help. "I don't want to stand out and have people feel sorry for me. I feel awful when people cry."
Running is a refuge. Every Saturday he runs about 20 miles. Jake has run 37 Boston Marathons and is registered to run again in 2020. Often ALS attacks a patient's feed and legs first. But Kennedy's most noticeable impairment is his ability to speak which he says is "going downhill rapidly." Yet he insists he feels great.
Even now, you won't hear Jake complain. "I am the luckiest man who ever lived…my family, my wife, my four kids, my job and Christmas in the City. That will never change."
Zack Kennedy, one of the Kennedy's four children, is engaged in postdoctoral research at UMass Medical School. He worked in Dr. Brown's lab before his father's diagnosis and now approaches his quest to find targeted ALS therapies with even greater urgency. "We are racing to get drugs out there and they are coming soon," Zack said.
He says he is glad to be able to help his three siblings (Alyse, Dean and Chip) understand the disease. The experience, painful as it is, has brought into even greater focus just how extraordinary his parents are. "Overnight our worlds changed. My mom didn't skip a single beat. Getting insurance in order, doctors in order, prescriptions. That is no small task. It's a nonstop job." He pauses. "When I look at them and the team that they are, I feel so lucky and I feel so blessed."
Sparky feels blessed too. And when the diagnosis feels most overwhelming she says she is grateful to the many people who have offered love and support. But there is simply no way to reconcile that one of the world's truly "good guys" is facing such a terrible disease. "He is just the nicest guy," Sparky said. "It makes me feel so fortunate we've been married so long. We're just going to move on with this because he is the most giving human being on earth."
For more information or to donate visit: JakeKennedyALSFund.org
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