Longtime Del Mar residents Jill and Evan Stone will be recognized for their visionary support of the Foundation Fighting Blindness organization at the May 22 Dining in the Dark event to be held at the Hyatt Regency La Jolla.
Over the last decade, the Stones have raised over $1 million with their fundraising events for Foundation Fighting Blindness, motivated as parents to two children with Usher syndrome, which not only results in profound deafness but causes progressive vision loss.
Both of the Stones’ children, 38-year-old Liz and 31-year-old Adam, were born deaf. They did not discover that their children had Usher syndrome until Liz was a freshman in college and started to experience the symptoms of retinis pigmentosa, the loss of peripheral vision.
She was then a student at the Rochester Institute of Technology in New York and attended school with a population of 1,200 deaf students. Her classmates were able to recognize that she was not responding to their waves and gestures.
After visiting a specialist, the Stones were told that their children will most likely become blind and that there is no cure.
Evan said the words “devastating,” “dismay” and “depression” come to mind when he thinks of what he was feeling as a father that day.
“It was just a shock,” Jill said. “Here we’d spent all these years, time, money, education and therapy to get our children to feel good about themselves and make their way in the world and then boom, the other shoe dropped.”
“If your child is deaf and blind, your child is cut off from the world almost entirely,” Evan said.
Now national trustees for Foundation Fighting Blindness, the Stones held their first fundraiser in 2003 and this year’s Dining in the Dark will be their 11th event. They started with charity wine tastings and auctions, but the Dining in the Dark concept began in 2008.
At the event, guests are challenged to eat their main entrée in total blackness. Visually impaired servers present the food to the guests using a system of ropes and stanchions. The servers share their experiences to help diners navigate their meal under extremely unique circumstances that for the visually-impaired servers is their daily life.
“Reactions to Dining in the Dark are truly powerful, I think, because people don’t often realize the daily obstacles of living with low to no vision,” said Jill Stone. “As cutting-edge gene therapy and stem cell research progresses in clinical trials that are already restoring some vision in patients, we’re so hopeful that treatment and cures are in sight.”
The Stones’ son Adam has participated in past Dining in the Dark events, attending with his deaf friends, and it is a very different experience for them.
“When the lights were on, he and his friends were communicating ferociously,” said Cheyanne Sauter, Foundation Fighting Blindness assistant director of events, western region. “But when the lights go off, he loses all form of communication.”
While other attendees can talk with each other to pass the butter or ask their neighbor what they think it was they just took a bite of, Adam and his friends were only able to use tactical signing to communicate via touch.