Benefits planned for Lily Faith Tinney

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Sharpsburg's Lily Faith Tinney, now age 16 months, has been diagnosed with GM1 Gangliosidosis Type 1, a very rare Lysosomal Storage Disorder. At this time, there is no cure, say family members.

Two fundraisers are planned to benefit a Coweta child with a rare genetic disorder.

Lily Faith Tinney is 16 months old and lives in Sharpsburg with her mother Sara Tinney – a student at Northgate High School – grandmother Wendy Tinney Gancasz and Sara's brother Justin. When Lily was 14 months old she was diagnosed with GM1 Gangliosidosis Type 1, a very rare Lysosomal Storage Disorder, explained her great-aunt Rhenna Tinney. At this time there is no cure.

“This disease is so rare that only 200 infants have been known to have it and all have died by age three,” Tinney said. “Lily is sadly on the extreme end of this disease and is at home under hospice care. She has been given six months to live.”

The first of the fundraisers is at Starlite Family Fun Center in Sharpsburg on Saturday, May 4. The theme of the event is “Calling All Superheroes,” and young attendees will get to meet the Amazing Spiderman. Admission is $5 and all proceeds from skating admissions from 6-8:30 p.m. on May 4 will be donated to the Lily Tinney Fund. The skating center is at 55 Thomas Grace Annex. For more information on the event call 770-252-9500.

The second fundraiser is Lily Tinney Day, which will be held by family and friends on May 24 at the Great South Harley Davidson store south of Newnan at 185 Highway 16 East. There will be a day of fun with vendors of all kinds, food, music, raffles, cake walks, a yard sale and more. The vendor charge is $20 per booth.

“We are doing a yard sale and are accepting donations for that and items for a raffle,” said Rhenna Tinney.

“We will also have a Ride for Lily motorcycle ride starting at Harley at 10 that morning,” she said. The entry for the ride will be $20 per biker and $10 per additional rider. Registration begins 8 a.m. the day of the ride. The entire family friendly event runs 8 a.m. - 3 p.m., Tinney said. “We will be cooking hot dogs for the bikers,” she added. All riders will be given a ticket at registration for food and drink upon return from the ride.

Team Lily shirts are being sold through Doc Fuller, Tinney said. They are $12 each and Lily will get $2 per shirt.

Anyone wishing information on donations may email Ansley Byrd at chrisburd420@gmail.com . For information concerning the motorcycle ride contact Rhenna Tinney at 770-686-0101 or email her at rhenna79@gmail.com .



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