Written by Matthew A. Piacentini Wednesday, 20 July 2011 14:46
According to Glen Cove mom Laura Perfetti, there are 25 drug trials going on now for various drugs to treat the affliction causing tumors to grow on her 9-year-old daughter Julia’s nerve tissue. Tenf years ago, there were none.
That means the tireless efforts of families like the Perfettis – to raise funds for research in the fight against neurofibromatosis (NF) – are starting to show results. Across the country, concerned parents and the supporters behind them have been putting on things like the annual carnival in Glen Cove to keep hope alive.
This Saturday, the money spent for games, food and raffles will again go to the Children’s Tumor Foundation, earmarked for research that can ease the symptoms of NF. Laura described the affliction, “The cells in [Julia’s] body move too fast. Therefore, tumors grow, sometimes right on nerves. So it is difficult or impossible to operate. Or, even after an operation, new tumors grow back… It covers your whole body. There is no part you can say, ‘it’s probably OK.’ You always have to wonder and worry.”
So far Julia’s family has personally raised $200,000 for the Children’s Tumor Foundation. They have to pay to do a drug trial, and each one so far has cost around $25,000. So, the fundraising is very necessary. Regarding the research, she said, “We are hoping they can come up with a cocktail of drugs to prevent the tumors from growing.”
The research and fundraising have led to some relief. They have discovered a treatment that at least alleviates the extreme pain that young Julia has been braving.
But, a search for more of a treatment is getting urgent. “We’re really hoping for the ‘cocktail’ in the next few years because everything seems to accelerate with puberty,” shared Laura. “Julia is turning nine now.”
Again, for 2011, Saturday’s carnival will be a big treat for anyone who wants to help the Children’s Tumor Foundation.
Local businesses donate items for fun and really great raffle prizes like massages, Sesame Place passes, a camera, Gamin Ride gift cards and more. Representatives from the Islanders are coming with vouchers for free tickets to games and a bounce house. The Glen Cove Fire Department is bringing a firetruck and the GCPD are bringing a police car for kids to check out. Favorite attractions are back, like: the dunk tank; cotton candy, burgers and hot dogs; Glen Cove Beer Distributors is donating a very generous supply of water; Rita’s is bringing over ices; pony rides from 1 to 2 p.m.; sand art and more.
Everything at the carnival costs $1 and a family can come for an unlimited pass for $100.
To make a donation, people can drop a check at 57 Sugar Maple Lane, call Laura at 641-4103 or to learn more about NF, go to www.teamjuliabug.com.