Marrow transplant connects York dad, donor's mom at Boston Marathon
Even though Tom Duffy completed his first marathon last year, he still doesn't consider himself a "runner."
Hitting the pavement leaves his body sore and aching — and 26.2 miles is a long way to go, he said.
"For people who don't run, it's painful," said Duffy, 37. "People do this for fun. There's nothing fun about it."
On Monday, when the Springettsbury Township resident runs the Boston Marathon — his second marathon, and also his last — he'll put his pain in perspective.
It's nothing compared to the pain of his youngest son, Joey, who's spent three Christmases in the hospital and has had "more pricks and prods than most adults," Duffy said.
"Twenty-six miles is a challenge, but it's nothing compared to what he's been through," he said.
MDS: Joey, who will be 5 in May, was born two months early, weighed just 3 and a half pounds and has had many health issues, Duffy said.
In July 2012, Joey was diagnosed at 2 years old with MDS — or myelodysplastic syndrome — a rare disease that's considered a precursor to leukemia, Duffy said. The U.S. sees about 13,000 new cases of the bone marrow-failure disorder each year, according to the American Cancer Society.
Joey needed a bone marrow transplant, but none of his family members — not his dad, his mom, Maura, nor big brothers Tommy and Mick — were a perfect match, Duffy said.
But by Thanksgiving weekend in 2012, the family found out Joey had an anonymous bone marrow match, he said.
By March 2013, the donor's bone marrow was extracted, flown to Johns Hopkins and delivered into Joey's bloodstream, although the transplant kept him in the hospital for about 120 days, Duffy said.
As the preschooler tinkered with his toys, his dad said he's more playful and energetic after the successful transplant.
"He's as good as he is because of a complete stranger," Duffy said.
Who's the donor?: In March 2014, the Duffys filled out paperwork to request the donor's identity, he said.
"We went from November 2012 to March 2014 saying, 'Who is this person?'" Duffy said.
Before long, the Duffys learned who provided the lifesaving marrow: Robbie Brengle from Ipswitch, Massachusetts.
Now 22, Brengle is a senior at the University of Michigan. He said he was 20 years old and in his freshman year when his fraternity organized a bone marrow registration drive in spring 2012 — and all it took to register was a swab of the mouth.
Brengle said he got a call one day in early October saying he was a potential match for a 2-year-old boy.
"And I said yes, of course," he said. "I was honestly kind of excited. It was definitely surprising, to say the least, because it's (a chance of) less than 1 in 500 that you actually get called."
Meet the Brengles: Not knowing Joey's identity didn't stop Brengle's mother, Susan Brengle, from raising money for the Dana-Farber Cancer Institute as she ran the Boston Marathon in 2013 and 2014. Dana-Farber doctors oversaw her son's bone marrow donation process, she said.
Since Susan Brengle knew only Joey's age, her T-shirts read, "For our 2-year-old" and "For our 3-year-old."
Now, she'll start the race alongside Duffy as they both run for cancer research with the Dana-Farber Marathon Challenge team.
"What a great way to bring this whole thing together and give back," Duffy said.
It'll be Susan Brengle's sixth Boston Marathon and eighth overall marathon — and her first race with both her son and Joey in the crowd, she said.
Joey now shares her son's blood type, and "we all feel very connected to each other, for sure," said Susan Brengle, 51.
Transplants between young donors and young patients "work beautifully," and Robbie Brengle was given an amazing opportunity to impact Joey's life like this, she said.
"I definitely thought it was one of the more positive aspects to come out of the fraternity experience of a sophomore boy at a big university," Susan Brengle said.
Connected: The Duffy family met Robbie Brengle when he came to York to visit in August 2014 — and they'll always be connected, Duffy said.
"He's on the mantle," he said, grabbing a framed photo of Robbie and Joey. "He's part of the family now."
"I just gained a whole new set of brothers with the Duffy boys, and it's been great to know them," Robbie Brengle said. "I'm glad I'll have them for the rest of my life now."
The journey with Joey has been life-changing — especially when considering that, if he were born 30 years ago, he wouldn't be here, Duffy said.
"It puts things in perspective for you. It makes you not get upset over random, minor things. It makes me appreciate life more," he said.
For the most part, Joey can't be dragged away from his toys or his dog. But when his mom asked if he loved Robbie, he replied that he did.
"I'm gonna give him a hug," Joey said.
"A big hug?" Maura Duffy asked.
"Big hug," he replied.
Give back: To support Tom Duffy and the Dana-Farber Marathon Challenge team, visit www.rundfmc.org. The fundraising for cancer research continues through May 20.
Joey Duffy has motivated about 500 people to join the bone marrow registry. To join the registry and find out more about becoming a donor, visit www.bethematch.org.