An Ilion family is raising funds to seek a cure for their daughter’s rare eye disease and two local businesses teamed up to help.
Cecelia Cole, who will be entering second grade at Barringer Road Elementary School in Ilion in the fall, has a rare degenerative eye disease that will eventually lead to total blindness, probably before her 20th birthday. The Cole family, along with others involved in the Fund for Sight, are raising moneys in the hope of finding a cure.
Richard Keeler, of the Side Street night club on South Otsego Street in Mohawk, said proceeds from Side Street’s third annual golf tournament are being donated to the fund. About 60 golfers took part in this year’s event, according to Keeler, who said the proceeds from each year’s tournament are donated to a charity with a local connection.
Fastrak matched the amount raised with $2,900 from the Fastrak Cares Charity, according to Jim Allen, vice president of marketing for Fastrak, bringing the total donation to a little less than $6,000.
Cecelia has a form of Leber’s Congenital Amaurosis called RDH12. Her eyes have trouble recycling molecules, known as retinols, which give her the ability to detect light, according to a letter put out by the family. She sees at a 20/80 level with her glasses, which is considered visually impaired. Plans call for her to receive one-on-one aid to begin learning Braille soon.
For the moment though, her interests differ little from other children her age. She enjoys swimming in the family pool, playing AYSO soccer and playing with her friends and her younger brother, Myles.
“My goal is to accomplish as much as I can and see as much as I can before my eyes go dark forever,” said Cecelia in the letter. “My family and I travel to Boston twice a year for check-ups.” In the spring, specialists assess the decrease in her vision from one year to the next. The follow-up trip helps determine what tools may be useful for her.
Of the appointments, she says, “I hate the eye drops, but love going to the aquarium, shopping or visiting my friend Kate.”
Cecelia’s dad, Jon Cole, a geometry teacher and head football coach at Central Valley Academy, said there are only 85 cases of the disease in the United States and 1,800 cases worldwide. That means the disease is not high on the list of those seeking research funds. That’s where the Fund for Sight comes in. Members have been in contact with Dr. Jean Bennett, of the University of Pennsylvania, who is seeking a cure. “Driven by the success of curing LCA caused by RPE65, (there are 15 known genes that cause LCA) we have the technology to develop a cure for RDH12,” the letter states. “Currently, this potential cure is in the test tube stage and awaiting clinical trial.”
Page 2 of 2 - The Fund for Sight has set a goal to raise $1 million, according to Jon Cole. So far about $978,000 has been raised. “Our chapter (eyelovececilia) has raised about $317,000,” he said, adding his cousin, a professional hockey player gave $250,000 to the fund. “All money goes to research.”
To donate, visit the foundation website at www.rdh12.org or send a check made payable to RDH12 Fund for Sight c/o Theresa Cole, 1738 Barringer Road, Ilion, NY 13357. All donations are tax deductible.