The Gallonio girls (from left, Lila, Ava, and Grace) with Miss Rhode Island Jessica Marfeo.
Grace Gallonio was not the one who was supposed to get sick. Her twin sister, Lila, had been diagnosed at birth with narrowing of her pulmonary and aortic valves. Grace, she’d been given a clean bill of health upon her arrival in the world in 2009.
Just past her first birthday, however, Grace was having GI issues. Her pediatrician sent her to the emergency room, where they discovered a tumor on Grace’s tailbone that had probably been there since birth. The next weeks and months were a nightmarish blur of surgeries, setbacks and hospital life.
The treatment – brutal as it was – worked and today Grace is a beautiful 4-year-old girl who only vaguely resembles the bald toddler with dark circles under her eyes and oh so pale skin who smiles out from photos in a homemade album from that tough time.
The Gallonio-LaRivieres, who live in East Greenwich, are nothing if not upfront about the miracle that is Grace. But they are equally upfront in their intense desire to help other families and to support Hasbro Children’s Hospital, where Grace received all of her treatment.
Grace was recently named the 2014 Children’s Miracle Network champion for Rhode Island, which means she will appear throughout the state on behalf of CMN, a nonprofit that supports hospitals like Hasbro that provide pediatric cancer care.
For Grace’s parents, Anthony Gallonio and Michelle LaRiviere, it’s just one way to say thank you to the doctors, nurses and others at Hasbro who both helped cure Grace and make life bearable.
“What it means to us is it gives us a chance to talk about Hasbro, just to let people know how lucky we are to have Hasbro,” says Anthony. “We were lucky in so many ways. We said we needed to give back.”
He recalls coming home one night and finding loads of tupperware containers on their kitchen counters. “I don’t know how we pay these people back,” Anthony remembers thinking. Then, one night, he arrived home from the hospital and there was no electricity. With everything that had happened, they hadn’t gotten around to paying the bill and the power had been shut off.
It got them thinking.
Anthony, director of financial aid for the Rhode Island School of Design, is all too well aware how hard it is for the typical student to navigate the college admission process. Add a cancer diagnosis onto that and the challenges compound. How do you keep track of it all?
And so was born the National GRACE Foundation – the Grace stands for Growing, Recovering and Achieving a College Education. The foundation offers college financial counseling free to college-bound students with cancer.
“I can help these kids – I know that they’re going through no the college side,” says Anthony.
The logo for the foundation was done by the Gallonio and LaRiviere’s older daughter, Ava, who made the rainbow illustration with a sun and three bright spots (the girls?) during the darkest days of Grace’s treatment. It was a powerful message of hope to Anthony and Michelle.
Before they had children, Anthony had ridden in the Pan Mass bike ride, a bike-a-thon that raises money for Dana Farber and he’d thought at the time how great it would be to have something like that in Rhode Island. And so, last year, the National Grace Foundation mounted the first RIde Against Cancer. The second ride will be Sept. 27. The course starts at Chariho High School and wends through southwestern Rhode Island to the coast.
Riders can take the 65-mile route or the 35-mile route. Participants are asked to raise at least $400. The ride will benefit The Tomorrow Fund, the National GRACE Foundation and the Isabel Helen Farnum Scholarship (awarded through the GRACE foundation to a college-bound student who has had cancer; Isabel died in 2012).
Grace’s surgeon, Christopher Muratore, has been part of the planning for the Ride too. “He was great,” said Michelle. For the Gallonio-LaRivieres, Muratore was one of many blessings that have come their way in the past four years.
“As bad as it was, there’s a lot of good that’s come out of it,” says Michelle.