Sometimes there are not enough hours in the day for 12-year-old Rosie Garvey.
The Amherst Middle School seventh-grader is an avid participant in field hockey, theater and dance — all activities that might normally be daunting for someone, like Rosie, with Cystic Fibrosis. “We’re in a good place but it could be better,” said Rosie’s mom, Paula Garvey. “We are very thankful for Rosie being as healthy as she is.”
The Garveys, of Amherst, learned of Rosie’s diagnosis in their home country of Ireland two days after she was born. “We were very fortunate to move to [the United States] when Rosie was three,” Garvey said. “All states in the U.S. now test newborns for Cystic Fibrosis and that is absolutely huge … we were very fortunate with Rosie as she was diagnosed early and was able to get treatment early.”
With the average life expectancy of Cystic Fibrosis patients not reaching 40, Garvey and a neighbor have taken it upon themselves to make a cure happen for Rosie and the other estimated 30,000 people affected by the respiratory disease. She has raised more than $400,000 in four years for the Cystic Fibrosis Foundation with “Taste for a Cure for Cystic Fibrosis,” an event featuring fare from local restaurants, beer, wine, auctions and fun. This year’s event will be held at the Southeastern Regional Education Service Center (SERESC) in Bedford, on Thursday, Feb. 3, from 6:30 to 10 p.m. Garvey hopes to raise $115,000 at the 2011 event, which has sold out every year.
“We’re just planning on getting a cure in the next few years — then we can focus on finding a cure for something else,” Garvey said. “These therapies cost money, we need to keep raising money.”
Garvey got the idea for the event from a Cystic Fibrosis conference in Bethesda, Md., when another attendant spoke of having run a similar, and successful, event for the cause.
“I said ‘Yes, let’s do it,’” Garvey said. She then took to the phones, and while many people said no, a lot said yes. The food, wine, beer, auction items and even the venue have been donated for the event.
“A lot of places totally invest in Cystic Fibrosis, which is incredible because there are a lot of worthy causes out there,” Garvey said.
One food vendor that has participated in the event since the beginning is Fredrick’s Pastries in Amherst.
“We always want to support the community around us in any way we can, especially for children…. It’s a great event and just something we need to put our effort into helping out with,” said Jen Wojtaszek, Fredrick’s Pastries general manager, adding that the bakery will serve its classic tortes and pastries at the event, including its new purple velvet torte.
In addition to Fredrick’s, the following local eateries are participating in this year’s event: A&E Custom Coffee Roastery, Buckley’s Great Steaks, Damian’s on the River, Eden Restaurant & Lounge, Firefly American Bistro & Bar, The Homestead Restaurant, Orchard Street Chop Shop, The Peddler’s Daughter, Piccola Italia Ristorante, Stella Blu and Wentworth by the Sea.
“We need a cure so Rosie can have the same dreams and expectations of her two sisters,” Garvey said. “Her big dream at the moment — of course it changes every day — is to go to Australia. She says ‘Mommy, I want to go but I don’t want to bring all of my medications.”
On vacations to Ireland to visit family, a nebulizer and breathing vest are two of the first items to be packed for the trip. She is put on antibiotics when she shows the slightest sign of a cold and in her adult years could need a lung transplant.
Money raised at the event goes indirectly through the clinic visited by Rosie — Children’s Hospital at Dartmouth clinic in Manchester — as it is accredited by the Cystic Fibrosis Foundation.
“[The Cystic Fibrosis Foundation] is very selective where they spend their money. There is very little waste and they do a lot of good research,” Garvey said.
Stacey Smith, senior director of development at Cystic Fibrosis Foundation of Northern New England, said she is grateful for Garvey’s efforts because the event raises not only funds but also awareness. She added that 90 percent of every dollar raised for the foundation is put toward research and she is very hopeful that a cure will be found in her lifetime.
Garvey, too, shared how hopeful she is that her daughter will one day be free of her nebulizer and breathing vest.
“It is a horrible disorder to deal with but what a hopeful time it is — the fact that there is good research going on,” Garvey said. “It is not all gloom and doom but it is a hard disorder for Rosie to deal with every day.”