Buried in Blackhawks jersey, Barrington boy still inspires

These emotional Stanley Cup Finals games would have thrilled Jeffrey Pride of Barrington.

"I imagine right now he'd have Blackhawks fever like nobody else," says his mom, Ann Pride.

Instead of wearing a Blackhawks jersey now, Jeff was buried in one when he died in 2000 of leukemia at age 7.

"We put him in a Blackhawks jersey and a Jeff Gordon hat," the mom says. "My husband said that putting a little boy in a suit just didn't seem right."

Playing video racing games while stuck inside during his chemo treatments turned Jeff into a fan of NASCAR driver Jeff Gordon. But hockey was something he got a chance to do. In the family photograph of Jeff in his hockey gear, his helmet covers much of his face, but you can tell by the crinkles in his eyes that he is sporting a beaming smile.

"Even though he was just 6, he was about to be assigned to his first real team, and that was when he relapsed. Hockey was one of his favorite things. He loved that," his mom says.

Hockey gave her one of her happiest memories during her son's illness.

"The neighbor boys were out playing street hockey, and Jeff was able to play with them for a couple of hours," Ann Pride recalls. "It was a completely normal day, and he just spontaneously said, 'This has been the best day of my life.'"

Giving other families a chance at more best days is the goal of The Jeffrey Pride Foundation's 12th annual golf fundraiser on Friday, July 26, at Makray Memorial Golf Club in Barrington. (Go online to jeffreypridefoundation.org for details.) Friends and neighbors Phil and Jan Fijal and Jim and Karen Powell helped organize the foundation.

"We had a fundraiser while Jeff was living and we weren't sure where to donate the money," remembers Jan Fijal. "During that process, we learned there really wasn't much money directed to pediatric cancer research."

Since then, The Jeffrey Pride Foundation has donated about $1.3 million to fund pediatric cancer research and sponsor trials for drugs such as Gleevec, which has been shown to double cure rates and was approved by the FDA earlier this year to treat children with acute lymphoblastic leukemia.

Jim and Ann Pride and daughters Amy, 24, and Lisa, 22, find comfort in knowing that Jeff's short life made an impact.

"Jeff had good taste in friends," says Ann Pride, remembering the boys, now in college, that her son befriended through hockey, Indian Guides, kindergarten and the close-knit neighborhood. "Watching these boys grow up, it's one of these things where you say, 'Jeff should be there.' But families that Jeff was friends with have remained friends with us. It's really heartwarming for Jim and I to have such good friends."

One of those friends and neighbors, Mark Thierer, is the honorary chairman for this year's golf outing. Thierer, chairman and CEO of the Lisle-based pharmacy benefit manager Catamaran Corp., has fond memories of his son, Jonathon, now a 20-year-old college sophomore, playing in the cul-de-sac with his best friend, Jeff.

"Their big thing was building snow forts," Thierer says, recalling how the boys would create complex structures with different rooms and levels.

"His dream was actually to be an architect," Ann Pride says of her son, who went to kindergarten but was too sick to move on to first grade.

"Right before his fifth birthday, he had some infections that wouldn't go away, and then he had a lump on his scalp," the mom says. "At first we were just stunned: 'This is like getting hit by lightning, a one in a million chance.' But the reality is one in 300 kids will get cancer before age 20."

Told Jeff had an 80 percent chance of beating the disease, his doctor father, an internist, and his mother made sure their son had the best of care. Big sister Lisa donated the bone marrow for a transplant they hoped would save Jeff. But the little boy wasn't one of the luckier children. Having exhausted treatment options and very ill, Jeff went trick-or-treating for the last time dressed as NASCAR's Gordon. The boy died in his home 10 days later, surrounded by loved ones in his parents' bedroom just three days after his seventh birthday.

In the months before he died, Jeff was enrolled in an experimental treatment program.

"That's when we realized just how underfunded pediatric research was," Ann Pride says. "We knew back then we had a very slim chance of helping Jeff, but we thought this research could help other kids."

With his charity now in its 13th year, Jeff still inspires volunteers and donations.

"Once people hear about Jeff and why we do what we do, people want to do something," Jan Fijal says.

"There's a lot of research going on, and we need to fund it," Ann Pride concludes. "Nothing is going to take away the sadness of losing our son, but if it takes away that sadness for another family, it's an honor."