The energy to keep going
Dad runs for ‘Abby Mac’
It took a smile to bring out the competitive side of Greg MacCurtain.
Never much of an athlete growing up, the 40-year-old firefighter at Logan Airport was trying to keep up with his youngest son, Tomas, as he learned to ride a bike.
MacCurtain knew to keep up with his son he was going to need a bike of his own, but he needed a special one that could also transport his daughter, Abby. Now 7 years old, she was diagnosed at nine months with Leigh syndrome, a mitochondrial disease that affects one in 40,000 — with most not surviving beyond their toddler years. Her body does not turn food into adenosine triphosphate (ATP), which provides lifesustaining energy to cells.
Enter Triobike of Denmark, which makes bicycles and tricycles designed for cargo deliveries and pedicabs. While MacCurtain pedals, Abby is buckled in the front compartment as a passenger.
“She loves it,” he said. “She loves the wind in her face.”
Riding became a way for the two to bond while being able to enjoy the fresh air.
The bike rides led to races and triathlons. In the latter, MacCurtain tows his daughter in a kayak (with two spotters swimming alongside), then MacCurtain pushes her in a regular jogging stroller for the running leg.
They tackled their first marathon together in June in Cork, Ireland, borrowing a chair Dick and Rick Hoyt donated to a nearby running club. During the race, members of the Cork City Fire Department ran a relay alongside the MacCurtains in a show of support.
They now have one of their own chairs at their Plymouth house, painted green — the color for mitochondrial disease awareness — with wheels sporting the slogan, “Helping Others Produce Energy.”
MacCurtain will be in Hopkinton tomorrow along with thousands, running for their own cause. Abby will not be, however: The Boston Athletic Association has a minimum age of 18, and it considers the riders competitors just as much as it does the runners.
“I almost backed out because we got into this together, but at least I’m still running for her,” MacCurtain said. “The cause is still going to benefit her, so I decided to run.”
He has raised more than $3,000 of the $5,000 goal he set to help benefit the Mootha Laboratory at Mass. General Hospital, which focuses on mitochondrial biology.
“Everything I’ve been told from Abby’s team of doctors, if there’s a cure to be found, Vamsi Mootha is going to find it,” MacCurtain said.
That team of doctors, led by neurologist Dr. Melissa A. Walker, will be among those cheering for MacCurtain. The hope is that the weather will cooperate enough so that Abby can be at the finish line.
Greg and his wife, Heidi, were concerned right away about their daughter. She was having difficulty feeding, vomiting, dealing with high fevers and a stridor sound while breathing.
An MRI confirmed fears that Abby wouldn’t simply grow out of her problems. It showed lesions on the section of her brain that controls many types of motor movements.
“It was an indicator for mitochondrial disease, and they said the outcome’s not good. They gave her about two years to live,” MacCurtain said. “The outcome for our unborn child (Tomas) was anywhere from 25 to 100 percent. They didn’t know the cause why she had it. It was extremely stressful.
“But the whole time she was always smiling, she had her own laugh and giggle, and she’s been that way her whole life. She’s kind of an adventure girl and that’s kind of how we got started (racing).”
A feeding tube has helped limit the vomiting and aspirating, when food and drink goes down the larynx and can get into the lungs.
Abby is still the same smiling, laughing little girl with a thrill for speed or getting water splashed on her. She attends school at South Shore Collaborative in Hingham, where she receives occupational and physical therapies doing things like swimming and horseback riding. She uses an iPad with a communication app to go along with the words and signs that she knows.
The MacCurtains share their journey on Facebook with a page, “Friends of Abby Mac.”
“You meet Abby and you fall in love with her,” MacCurtain said. “She’s a bright, happy, little girl. I’m trying to open up inclusion for her. We’re trying to pave the way for awareness, diagnosis, more involvement in sports for her.”
He noted a story from earlier this month, where middle school students in Holliston created an attachment to a classmate’s wheelchair that allowed her to play soccer.
While MacCurtain hopes they will be able to tackle Boston as a team in the near future, they have a busy schedule planned for the spring and summer including the Tour de Creme next month, a 50-mile bike ride along the SouthCoast with five stops for ice cream along
the way.