To raise awareness of Jewish genetic diseases and keep the memory of her son alive, all Cindy Singer needed was a little faith, trust and pixie dust.
She organized the inaugural Festival of Wishes, benefiting Pixie Dust Wishes — a State College-based nonprofit founded in January 2017 that grants Pennsylvania children with disabilities or special needs and their families trips to Disney World — in Alverthorpe Park in Abington on April 15.
A Disney-themed extravaganza will be set up, including a kids carnival with games, face painting and a photobooth, plus a run/walk in the morning through the park with Disney tunes broadcasting throughout.
For Singer, the event is twofold: It benefits the nonprofit, which was started by Jaimie Miller, the sister of a childhood friend of hers; and it also is held in memory of her son Dylan, who passed away in 2016 at 19 from familial dysautonomia (FD), one of the rarer Jewish genetic diseases.
Since his passing — as well as before — Singer has become an advocate for testing for genetic diseases, even among non-Jews who can be carriers for Jewish genetic diseases, too.
She started working with Miller as the nonprofit was getting off the ground, and came up with the idea for the community festival as the first anniversary of Dylan’s passing approached.
“I had this need to do something to memorialize him,” she said, “because I could speak for most parents who have lost a child, that the only thing you really want is you don’t want the world to forget them because time moves on for everyone and you just want to find a way to somehow keep your child alive knowing he’s not here.”
She called upon her “village” of friends and volunteers who helped her organize the Path to the Cure a few years ago, which raised awareness of FD and Jewish genetic diseases, to help put together the Festival of Wishes.
While Singer and her husband took their younger son, Brandon, a Jack M. Barrack Hebrew Academy student, to Disney last year, Dylan didn’t have the chance to go as traveling was not an option for them. The festival and nonprofit will give that chance to other families.
So far, Singer said, Pixie Dust Wishes has sent three kids and their families to Disney. Singer hopes to be able to grant a fourth at the event.
The event raised more than $25,000 prior to the actual day, which amazed Singer.
“I figured even if we raised a dollar, it was a dollar more than what we started with,” she said. “I didn’t have any idea of what this would be like.”
There will be special guests, 10 food trucks, which offered to donate a portion of the day’s proceeds toward the cause, in addition to raffles of items like Fuji bikes and a Zahav cookbook and gift certificate.
She hopes that people will come out to enjoy what will hopefully be nice weather and learn more about genetic diseases.
“In this context, people are compelled to ask me how Dylan passed away,” she said, “so it kind of automatically brings to the forefront the raising of awareness, especially from the point of view that people still don’t know what it is or have never heard of it. … It sort of bridges the gap of raising awareness where I’m not always focused on the disease, but at least I’m able to bring out another side of what happens when you raise a child with disabilities, what the limitations are — traveling, and all that — and still raise awareness about the disease.”
She’s continued to work with the Einstein Victor Center for the Prevention of Jewish Genetic Diseases, creating videos and materials raising awareness of getting tested.
Planning the event has been an emotional experience for Singer, as the event will coincide closely with the anniversary of Dylan’s passing, April 24.
But she hopes the event will keep his memory alive and inspire others to learn about getting themselves tested and how they can get involved with organizations like Pixie Dust Wishes.
“The frustration of not being able to reach out and feel him and touch him and hear him is overwhelming at times, and this event brings that even more so to the forefront,” she said. “But then the eclipse side is there’s immense joy that comes with knowing that all these people in the community have embraced me personally and my family, and have also understood how special it is for me to find a way to keep his memory alive, and then do some good for kids who are like him who are otherwise not able to go on a trip like this.”
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