Joy Ride To Help Prevent Deaths Caused By Epilepsy
FALCONER – For the fourth year in a row, a joy ride will be held to help prevent deaths caused by epilepsy on Aug. 30 in Falconer.
Thomas Joseph “T.J.” Joy grew up like other little boys. He enjoyed listening to music and watching football with his father, uncle and grandfather. He loved watching Curious George and riding around on his John Deere Gator. However, at the age of 2 – a week before his birthday – T.J. suffered a seizure in his sleep. On Nov. 7, 2010, T.J. joined the other estimated 50,000 Americans who die due to epilepsy and epilepsy-related causes every year.
T.J., the only child of Joseph and Angela Joy of Irving, had a rare brain malformation called PolyMicroGyria (PMG) which leads to feeding problems, developmental delays, mental deficiencies and epilepsy. He attended pre-school at the Springville League for the Handicapped and went to Harvest Chapel Nursery. After his death, T.J.’s parents were told about a seizure mattress alarm that could have been purchased, potentially saving his life.
“You put it where they are sleeping, and then either if they start to have convulsions it will alarm there is too much motion on the mat. If they stop breathing, it will alarm there is not enough movement. It’s sensitive enough to pick up typical movements in the night,” said Mrs. Joy, going on to say the mattress was portable. “… If T.J. had one of those and when he had a seizure, the alarm would have gone off. We would have been able to administer his medication and call emergency services and take him to the ER.”
Currently, these mattresses – which can range in price from anywhere to $500 to $800 – are not covered under any insurance plan. The T.J. Joy Fund and Joy Ride was established in T.J.’s memory four years ago in order to raise funds to purchase these mats to prevent future death of seizures and other financial needs incurred by PMG and epilepsy patients.
“We helped many families with the mats,” Mrs. Joy said. “We also helped a girl whose insurance wouldn’t cover her medication and it was out of pocket $500 a month for her seizure medications. So, we did help her out with a month’s worth of medications.”
Starting at Harley-Davidson of Jamestown in Falconer, the route goes through Chautauqua, Erie and Cattaraugus counties before ending in Forestville where the benefit will take place. Registration begins at 11 a.m., and at noon the motorcycles will send off before arriving at the American Legion in Forestville at 2 p.m.
Pre-registration will be open until Aug. 24 at $15 per bike and $5 per buddy with the inclusion of a free gift. On the day of registration, it will be $20 per bike and $5 per buddy. For those who wish to attend the benefit without participating in the dice run, admission is $10 per person, and children under 12 are free. Those who wish to donate money can do so by sending monetary donates to the TJ Joy Fund at M&T Bank on 10 S. Main St. in Silver Creek or via Paypal to tjjoyfund.gmail.com.
Rustic Ramblers and Sean Patrick McGraw will provide the musical talent, and Maximum Force Wrestlers will also be attending. The benefit will have food, a Chinese Auction, raffles and more. Those wishing to donate to the Chinese auction may call Paula Joy at 965-2926 or 410-0373.
Any questions regarding the Joy Ride or benefit, may be directed to Angela Joy at 698-7583.