From 11 a.m.-2 p.m. at Farmer’s Daughters’ Drive-In on Route 29, a special fundraising ice cream social is being held in honor of a friend, by a friend.
The friends, Matthew Rosato and Jimmy Fox, are an unconventional yet incredibly dynamic duo; one lives with cerebral palsy, while the other battles a terminal illness.
“Matthew has Sanfilippo syndrome,” said Kathleen Buckley, Matthew’s mother and president of the Team Sanfilippo Foundation. “It’s a terminal genetic illness that was diagnosed when he was 8.”
Occurring in only one of every 70,000 births, Sanfilippo syndrome is rare- so rare that most pharmaceutical companies can’t profit providing services to the population and treatment plans aren’t clearly defined. Children diagnosed with the disease have a life expectancy of 10-20 years, eventually go blind, need feeding tubes and are bound to wheelchairs in the final years of their life.
“[After] my son’s diagnosis, the doctor told me there is nothing I could do and just to go home,” said Buckley. “It made me think: ‘No, I'm going to fund my own research and help my son.’”
So in 2007, with only a few thousand dollars, Buckley founded the Team Sanfilippo Foundation and began doing everything in her power to prolong and better the quality of her son’s life, including enrolling her family in karate.
“Matthew is very hyper and active; he doesn’t sit down for a minute,” said Buckley. “It takes a lot of energy to keep up with him, so my daughter and I take karate at Saratoga Karate. Matthew started classes there years ago but was unable to continue due to his deterioration. The school has taught us to never give up and has given us the strength to fight for Matthew.”
It’s there that Matthew was introduced to a very special boy, Jimmy Fox. Also an active and motivated kid, Jimmy and Matthew became fast friends. Diagnosed with cerebral palsy at a young age, Jimmy has had his own share of obstacles to overcome.
“Jimmy is a hard-working, dedicated friend,” said Buckley. “His family has always pushed him to reach his goals, and he is now a brown belt at Saratoga Karate. He gets no special treatment and is expected to put in his best effort like all the rest of the students.”
When Jimmy was told that his friend Matthew had a terminal illness, like Buckley, he immediately became proactive.
“When he was told about Matthew’s illness, [Jimmy] asked me, ‘You’re not going to let anything happen to my buddy, Matthew? I want him to stay with me,’” said Buckley. “Jimmy makes sure Matthew is safe and is always concerned about raising money for him. This fundraiser is Jimmy's idea and he has worked hard to get ready for it.”
“Matthew is so special because he loves everyone,” said Jimmy. “He is always happy, and I love teaching him new things, like going under water in the pool. I love the Farmer’s Daughters’ and everyone loves ice cream. So I thought we should have Matthew’s fundraiser at my favorite place.”
The fundraiser, called “Jimmy Fox’s Ice Cream Challenge” is being held Saturday, August 18, from 11 a.m.-2 p.m. Family-friendly activities like a bounce-house, pony rides, raffles, an ice cream eating contest, and, of course, a martial arts demo from Saratoga Karate, will make the event one to remember, and proceeds will benefit the work of Team Sanfilippo Foundation.
“Matthew is a very active boy, and we are working hard to make sure he stays that way,” said Buckley. “We have scientists working in Texas, Italy and Australia on possible treatments for Sanfilippo syndrome. Our goal is to have a clinically ready treatment in a few short years.”
Through their adversities, both Buckley and Jimmy have come to know the importance and value of friendship, and they draw strength and hope for the future from their community.
“We all get knocked down and have to get back up,” said Buckley. “You meet your difficulties in life head-on and keep fighting with your [community] behind you.”
To see how you can help Matthew and other kids like him, stop by the ice cream social or visit www.teamsanfilippo.org and make a donation. Checks can also be mailed to P.O. Box 144, Saratoga Springs, NY 12866.
