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Kevin Cullen

Jake Kennedy has ALS. He will fight it with all his might

Jake Kennedy and his wife, Sparky, started Christmas in the City in 1989 to help homeless children.
Jake Kennedy and his wife, Sparky, started Christmas in the City in 1989 to help homeless children.Bill Brett for The Boston Globe/File 2017

A few years ago, on an idyllic summer’s afternoon, Jake Kennedy stood near the shoreline of a lake in southern New Hampshire, nursing a Corona, talking about the homeless families he and his family and friends have brought comfort and joy to for three decades.

“You talk to them,” he said, “and you find out that a lot of these people just had some bad luck. They just got dealt a bad hand.”

And now I am sitting here, with those words swirling around my head with a ferocity that curses bad luck and bad hands, because Jake Kennedy has been diagnosed with ALS.

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Every year, as the holidays draw near, I write a column about Christmas in the City, the gift to homeless kids and their families that Jake and his wife, Sparky, started in 1989 with a handful of volunteers at their sides and the true meaning of Christmas in their hearts. It is an annual appeal for and celebration of this remarkable feat of compassion and generosity — which this year expects to provide gifts to more than 6,000 homeless children — that I inherited from a previous Globe columnist.

This year was supposed to be special, and even more poignant, because it’s the 30th anniversary of Christmas in the City. But now it’s a different kind of special and achingly poignant because Jake Kennedy, one of the city’s best and most generous human beings, is facing as grave a challenge as any. This, all in the same week that one of the great heroes in the fight against ALS, Pete Frates, goes to his grave.

ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a progressive and eventually fatal neurological disease in which your mind remains robust while your body gradually loses its functions. It is an especially cruel condition that can have a powerful genetic component, and has been visited upon the Kennedy family with unfathomable frequency.

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Jake’s dad, Chris Kennedy, was the longtime dean of students at Northeastern University. When he retired in 1988, his big, sprawling family threw him a big, sprawling party, at which his ALS symptoms first became apparent.

Like several family members, Jake Kennedy has been diagnosed with ALS.
Like several family members, Jake Kennedy has been diagnosed with ALS.Bill Brett/File

Jimmy Kennedy, the youngest of Jake’s brothers, who everybody called Squirrel, was about to head off to Georgetown Law School but put that on hold and moved back to the family home in Quincy to take care of his dad.

Chris Kennedy died a year after he was diagnosed. Squirrel belatedly went to law school and had just landed a big job with a big law firm when he suddenly began having trouble with his balance.

Squirrel Kennedy was 28 years old when a doctor looked him in the eye and told him he had ALS. He fought it like hell and lived twice as long as his initial prognosis. He was 31 when he died.

That’s the thing with ALS. You can fight it and defy it, but only for so long.

After Squirrel died, Richard Kennedy, who everybody calls Ratt, started the Squirrel Run to honor his younger brother’s memory and raise money for ALS research. It remains an annual event in Quincy that brings out big crowds for a good cause.

Ratt Kennedy, who with Jake founded Kennedy Brothers Physical Therapy and like every other Kennedy enlisted in Jake and Sparky’s Christmas in the City army, went on to become president of the Angel Fund, which has raised millions for research, much of it funding the work of Dr. Robert H. Brown Jr., one of the world’s leading ALS specialists at the University of Massachusetts Medical School.

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Jake and Sparky’s son, Zack, became a scientist with a purpose, going to work as a researcher with Dr. Brown, trying to find a cure for ALS.

Three years ago, Ratt Kennedy was training for his 32nd Boston Marathon. He was 8 miles into a long run when his left leg just quit on him. He was about to turn onto the road into World’s End in Hingham. Instead, he walked 8 miles to his house in Cohasset, knowing in his heart and his head that he had the same condition that killed his father and his brother.

And now, three years after Ratt Kennedy was diagnosed with ALS and as he continues to fight it with everything he’s got, his brother Jake is in the same boat.

There is no self-pity in Jake Kennedy, who is 64 — four years older than Ratt. His speech already has been severely compromised, but his mind is still sharp. He wanted to get through the holidays without telling anybody outside of his family and close friends, but his speech has deteriorated to the point that he knew he had to let others know the reality.

Typical of Jake, he’s looking at the bright side.

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“There’s been so much progress in ALS research,” he wrote in an e-mail to me recently. “I’m very optimistic. I believe a cure will be found soon. I want to stay positive, and I want everybody else to stay positive. I’m going to fight this, and we’re going to beat this.”

His friends and co-workers are devastated, but they are following his lead, keeping upbeat.

Max Julien, who runs the front desk of the Franklin Street clinic like a field general, somehow managing to get patients in need of physical therapy and young mothers with wish lists sorted at the same time, says the Christmas in the City team is more determined than ever.

“We love Jake,” she said. “We’re all going to be there for him, and we’re moving forward, on all fronts.”

Also typical of Jake, he’s thinking of others, not himself. He doesn’t want his son to feel any undue pressure as an ALS researcher. And he wants, more than anything, not to divert attention from Christmas in the City’s annual need for more contributions.

In 1989, he and Sparky and their small group of volunteers served 165 homeless kids, giving them the one gift they really wanted. It has grown and grown and it is now a massive Christmas party with amusement rides and amazing decorations that converts the Boston Convention and Exhibition Center into a winter wonderland. On Dec. 22, they expect to top last year’s record of more than 6,000 homeless kids from more than 50 shelters in and around Boston. They’ll hand out gifts to thousands of other poor families the day after.

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So, if you ever needed a reason, please go to christmasinthecity.org, call the Kennedy Brothers clinic at 617-542-6611, or stop by the clinic at 45 Franklin St. downtown to contribute a gift or get the name and wish list of a homeless kid.

You can do the same at any number of the other Kennedy Brothers clinics, and there are dozens of dropoff spots listed on their website.

Sparky Kennedy knows she has a lot to do in the coming weeks and months and years. But first she wants to get through the 30th annual Christmas in the City. She is focusing on helping other families before turning her full attention to her own.

“We’re good,” Sparky told me. “At the end of the day, we have four beautiful children. That’s what we gave each other.”

Jake and Sparky Kennedy gave us a lot more than that, creating something that will outlive all of us. Christmas in the City is a well-oiled machine now, with thousands of volunteers who can’t imagine a holiday season that doesn’t include them helping to make a special day for some of the most unfortunate and vulnerable among us.

A while back, I sent Jake an e-mail asking how he was doing. He replied with his usual cheerfulness, adding, “I am truly the luckiest man in the world.”

Somebody else said something like that. His name was Lou Gehrig.


Kevin Cullen is a Globe columnist. He can be reached at cullen@globe.com.