'One more day, one more week, one more month': A new kind of 'Iron Horse' confronts ALS

Dennis Crawley Jr. became a New York Yankees fan as a kid, back when he could run across the street from his South Buffalo home to throw a tennis ball off the wall in the Bishop Timon parking lot. The Yankees of that era had Reggie Jackson and Thurman Munson, but Crawley found his hero waiting for him in the past.

“As long as I’ve known him, he’s always had a soft spot for Lou Gehrig,” said Tony Sekuterski, a longtime friend and assistant baseball coach to Crawley at Depew High School, where spring tryouts begin Monday.

Gehrig rose into baseball's Hall of Fame through both staggering consistency and power. Still, that hardly explains why Crawley’s daughter Ashley wore Gehrig’s No. 4 on the softball field, or why his son Justin has a tattoo that intertwines the memory of a beloved aunt and Gehrig, or why a decal honoring the legendary Yankee now stretches across the back of Crawley’s truck.

Adam Scibetta, a just-graduated co-captain from Depew, understands it is all part of a coach who teaches one central message:

Never quit.

Crawley was 11 when he lost his mother, Mary Ellen Weaver Crawley, to amyotrophic lateral sclerosis, or ALS – the illness often known as Lou Gehrig’s disease, synonymous with the life and death of a Yankee great whose strength, endurance and bearing during irreversible struggle are all part of his nickname as the “Iron Horse.”

That disease, a creeping paralysis that eventually involves the entire body, took the life of Deneane Chiplock – Crawley’s sister and the subject of Justin’s tattoo – who died at 41, about 18 months after doctors told her of the condition. It also claimed Crawley’s grandfather and two aunts, including his mother’s twin.

“It is a very fast strain,” Crawley said, speaking of the lethal velocity of this genetic form of the disease, which leaves each family member with about a 50% chance of inheriting it. Over three generations, beginning long before Crawley grew into a husband, father and baseball coach who now runs the varsity program at Depew and a teen travel team, the disease claimed 26 others in his extended family.

At 52, Crawley hoped that 50-50 chance was breaking his way – and even last spring, when he started having trouble with his leg, he told himself at first it was typical for a guy his age.

For decades, he had declined to take a test that would have told him if he carried the gene, a hard choice that every member of his clan must confront. Late in the school year, his knee gave out while he refereed a high school basketball game between Timon and Nichols. Crawley put off going to Dr. Bennett Myers, a specialist at the Dent Neurologic Institute, until an MRI showed a tear in his meniscus and Crawley noticed twitching in his thigh.

He was pretty sure of the truth, even before Myers confirmed it was ALS.

“For about two weeks, I hated everybody,” Crawley said. His wife, Jen, speaks of how there were “a lot of tears” as they told their kids and others close to them, including Crawley’s players, what was going on.

Before long, Crawley came to a decision in line with who he is.

“He’s a South Buffalo tough guy,” said Anita Crawley, who is not only the center of family knowledge on ALS, but the attentive older sister who inspired her brother to become a Yankees fan, the sister who joined with Deneane to help raise Crawley after their mother died.

Years ago, she took the test and learned she has the gene. Anita said the chance she will contract the disease is “probable, rather than possible,” and she disciplines herself to embrace this attitude:

“We get up every morning and thank God for every day.”

Her focus, right now, is on her brother. Compared to the speed with which ALS typically moves through her family, he is doing well, and she prays a medical breakthrough might occur in time for him to benefit.

She joins Myers in describing Crawley as “bullheaded,” always blunt, a guy who tells his friends, players and co-workers exactly what he thinks – which means we probably should not even bring up umpires.

Then again, in what veteran ump and old friend Wally Bissett sees as kind of a revealing tribute, many of those who know all too well the sound of Crawley shouting "Hey, blue!" either donated to a GoFundMe page set up by friends for Crawley or showed up at a benefit in his honor in October that packed every room at an Elks Lodge in Lancaster.

Crawley has no illusions about how he is perceived.

“I don’t take any baloney," he said, though he uses a far more colorful word.

Still, in the days after learning he had the disease, he thought hard about his wife, his children and the players he coaches. He thought of how Justin is getting married next summer, while he and Jen are coming up on their 25th anniversary.

“Those are his milestones,” Jen said, and Crawley intends to see them all.

When Myers suggested an experimental drug called Tofersen, one that specifically targets the SOD1 mutation carried by the Crawley family, Crawley did not hesitate – even though it requires spinal injections every month.

“If it gives me one more day, one more week, one more month, I’ll take it,” Crawley said of the drug.

That was six months ago. Sure, he has made concessions to ALS, such as moving from Depew to a new home in West Seneca where he no longer has to climb a flight of stairs. He walks now with a cane, and a moment when his knee buckled as he tried to hit routine grounders led to his most difficult decision.

Crawley had spent most of his working life in a steel plant or driving a truck. He was on the road one day a few years ago when he took a call from Richard Wozniak, owner of the Inferno Baseball program, where Crawley for years had brought his Depew team to hit indoors.

Wozniak wondered: Would Crawley want a full-time gig?

Crawley had always seen a job as a necessity, rather than a passion. This felt like a miracle, a chance to earn a paycheck doing what he loved. He began a new career as director of operations at the Athlete Factory in Depew, where his duties were to coach youth travel teams and teach baseball, which felt as though he had hit life’s lottery.

ALS swiftly convinced him he could no longer meet those demands. Wozniak had already hired a part-time coach, Joe DiLeo, for whom baseball is also heart and soul. A few months ago, Crawley quietly approached Wozniak and said, “I think maybe Joe should take this job.”

Crawley is hardly retired. He will return to coach at Depew this season – "There are student-athletes who might not have graduated without his influence on them off the diamond," said athletic director Robert Skoczylas – and he remains at the Athlete Factory as a coach and volunteer. But Crawley is frank about the magnitude of what he lost.

“The one job I wanted forever,” he said of the Inferno, “and now I can’t do it.”

He took a breath, then willed himself to shift perspective. Here it is – seven months past diagnosis – and he is still driving his truck. Not long ago, he went out and hit golf balls on an unusually warm February day with the childhood buddies from South Buffalo who remain his closest friends.

All told, Myers said Crawley "is doing considerably better than expected."

Crawley is not one for nuance, for gentle negotiation, which kicks off sparks sometimes, even with those he loves. He knew Jen when she was a kid and he delivered the paper to her house, and the childhood crush she had on the paper boy exploded into romance when they met again, in their 20s.

In June, they celebrate that 25th anniversary. Crawley said he has a new understanding of the most precious of gifts, how in a world where things can unravel or go wrong so quickly, nothing means as much as being able to bring your family together at one table.

Justin is now a police officer in Charlotte, N.C., while Ashley is a graduate student in mental health counseling who also works full time, driven by a ferocious ethic she saw in her father. Both have their own emblematic stories, such as when Justin describes a day when he played shortstop in MUNY ball and his dad suited up to pitch a couple of innings, just so father and son could be together on the field.

Ashley remembers playing in a teenage softball tournament in Watertown while Crawley was at a faraway tourney in the Carolinas – and how she looked up, just before a game, to see her dad climbing out of his truck after driving straight back.

“It’s baseball and his family,” Jen said of her husband, who now makes himself available for any ALS test or study, conscious of doing anything he can that might someday help his children or grandchildren.

As each day becomes a step into the hardest kind of knowledge, a great childhood hero feels less and less like history and instead takes form as a true presence. Crawley, who began collecting Gehrig memorabilia as a kid, is especially conscious of how the great first baseman carried himself in 1938. Gehrig was already suffering from what the doctors would later identify as ALS. Even as he felt strength draining from his body, he somehow batted .295 with 29 home runs.

Dan Joseph, whose book “Last Ride of the Iron Horse” chronicles those challenges, considers it one of the highest examples of grace and courage in baseball history.

“How do you hit 95 mph fastballs when your body is breaking down?” Joseph said. “You have to have incredible will to keep moving forward.”

Eighty-four years later, Dennis Crawley is having that kind of season.