Meet the US firefighter running the Cork City Marathon with his severely ill daughter
A FEW months ago, firefighter Greg MacCurtain swam across a lake with a rope knotted around his waist.
Tied to the other end of the rope was an inflatable kayak on which Greg’s delighted little daughter Abby sat, splashed by the water scattered by her father’s kicking feet.
On either side of the kayak swam two burly men — Michael Moriarty, Greg’s captain at the Boston fire-station where he works, and his cousin Stephen Sullivan. They were there, says Greg, both to keep a close eye on Abby, who spends much of her life in a wheelchair, and to ensure nobody could bump into the kayak.
“Abby had the time of her life. I kicked my feet and splashed her when I was swimming but she loved it,” he recalls.
Following the 15-minute swim across the lake in Plymouth, outside Boston in the US, he and Abby biked 14 miles, using a specially-adapted bicycle imported from Sweden, after which Greg ran 5km in 30 minutes, pushing Abby in a jogging buggy.
The six-year-old suffers from Leigh’s disease, a rare, life-limiting, neuro-metabolic disorder that affects the central nervous system, leaving her unable to walk, talk, or eat — she must use a feeding tube.
Although they have been running together regularly since Abby was four, this event, the Boston Pilgramman Triathlon, was the first big race in which the two of them participated. The second will be the
Irish Examiner Cork City Marathon on June 4, for which Greg, his wife Heidi, Abby, and the couple’s son Tomas, 4, will travel to Ireland.
“Abby is a very adventurous girl and she loves getting out and about and feeling the wind in her face when we run together,” Greg explains.
“I always say to her, ‘do you want to keep going, Abby?’ and she says ‘yes’, so we just keep on running.
“She’s not terribly verbal; she just has a few words.”
They also go cycling together regularly.
“She sits on the front of this specialised bike I got from Sweden. She can just sit into that and we cycle around, and Tomas is cycling on his bike with us too,” says Greg, 39, whose ancestors came from Cork.
His great-great-grand-uncle was none other than Tomás MacCurtain, former Lord Mayor of Cork.
Tomás MacCurtain, originally from Ballyknockane, was active in 1916 Rising and War of Independence and was murdered in his home in 1920 by members of the Royal Irish Constabulary.
Greg is deeply proud of that legacy, and he’s looking forward to meeting relatives in Ballyknockane when he comes to Ireland for the event.
Immensely fit, he has continued training since the Pilgrimman triathlon last year. He does lengthy training runs of more than 12 miles and attends 5am classes in triathlon training four times a week. “It’s cut back on the nights out and the drinking, that’s for sure,” he quips.
But as he’ll proudly tell you, it’s all for Abby. “I wasn’t always a runner. Mainly I do things with Abby. She’s in a wheelchair so it’s more in order to get out of the house with her,” he says, adding that when Abby was four, he and Heidi invested in a special jogging stroller so that Greg could go running with her.
“We entered a few races for fun,” he recalls, but mostly it’s about getting out and about.
“I’ve always been fit, but Abby was the catalyst for all the running.”
He’s training hard for June’s Cork City Marathon — hence the triathlon classes with a former Olympic athlete at a specialised gym — “he really pushes you” — plus that formidable weekly training run which is now up to 12 miles, and as he explains, an extra mile is added on per week.
Once the snow goes and the weather clears up a bit, he’ll go running with the stroller, though he won’t be carrying Abby in it, at least not quite yet.
“I’ll run with a 40lb sandbag in the stroller to train me up.
“That’s what I did over the summer for the Pilgrimman Triathlon. I did it with the bike and I’ll do it with the stroller in preparation for the Cork marathon which we might make an annual event.
During the Cork event he and Abby will be wearing special t-shirts emblazoned with both the American flag and the Irish harp when they run in the marathon, which takes place for the 11th time on Sunday June 4.
Over the years, the event, which is a qualifying race for the Boston City Marathon, has become recognised for its inclusivity, catering for runners, walkers, wheelchair athletes, fitness enthusiasts, and supporters, as well as those seeking a way to get fit, to set a new personal best, raise money for charity, or simply enjoy a day out with family and friends.
APARAMEDIC as well as a fire-fighter, Greg says now that he knew something wasn’t right with Abby from the time she was a very small baby. “I knew Abby was sick. She wasn’t making her milestones and she didn’t roll over and she didn’t crawl.
“She cried a lot and seemed very colicky, and she wasn’t babbling and had trouble ingesting her food.”
After seeing a string of specialists in her first few months of life, she was diagnosed with Leigh’s Disease, a life-limiting form of mitochondrial disease which affects one in 40,000 people.
“We were told when she was 10 months that she had two years to live. We know we’re living on borrowed time with her,” he says, adding that Abby is currently a participant in a drug trial in Ohio.
“The drug is supposed to either slow down or reverse the effects of the disease. She’s been on it for three years and neurologically she is making gains, so we feel it does have benefits for her,” adding that the family is in social media contact with some families in Ireland who are also affected by the condition.
Despite the challenges she faces as a result of her debilitating condition, he says, Abby adores life; she loves being out and about and feeling the wind in her face.
“It’s ironic, because her disease doesn’t allow her body to convert or break down her food into life- sustaining energy, which is why she is unable to walk, talk, and has a feeding tube — but she knocks fun out of life all the same.”
“Abby is such a strong little girl, determined to make an impact on everyone who meets her. One comment my wife and I often tell people is, ‘Parents teach their child about the world — and we need to teach the world about our child’.”
- Anyone who would like to reach out to the MacCurtains should contact the family through Abby’s Facebook page, friendsofabbymac
- Register or find out more information on the Irish Examiner Cork City Marathon 2017 online at www.corkcitymarathon.ie. For training tips or to share your Irish Examiner Cork City Marathon journey, follow on Facebook and Instagramcorkcitymarathon or on Twitter @TheCorkMarathon #MoreThanAMarathon
