As the night sky fell over Moser Tower on October 22, rays of green lights shown through the Naperville sky. They were in support of those who have Phelan-McDermid Syndrome, a rare genetic condition caused by a deletion or structural change to chromosome 22.
The tribute was thanks to Joanna Kent. Wanting to raise awareness for her son’s syndrome, she spoke with Naperville Park District about lighting up Moser Tower, and they literally gave her the green light.
“I wanted people in the community to know more about special needs because it’s really easy to not see it, and it’s easy to blend in,” said Kent. “I’m not shy if somebody asks me, ‘when’s he going to speak?’ And I say, ‘I don’t know if he’ll ever speak.’”
More About Sally
Sally was diagnosed with Phelan-McDermid Syndrome just two weeks before his second birthday.
Typical symptoms for the syndrome include developmental and intellectual impairment, but vary for each person. In Sally’s case, he’s lost some ability to communicate, but it hasn’t held him back from being himself.
“He’s a really happy guy, he’ll walk up to anybody and give them a hug. He loves people, and I think he gets that from his mom,” said Kent.
Community Members Show Their Support
Chicagoland residents showed to support Sally, and he was happy for the delicious treats they brought.
Tributes in light took place at locations worldwide. It was a particularly proud sight to see for Joy MacDonald, whose aunt by marriage started Phelan-McDermid Syndrome Foundation.
“It is full circle. When I was driving here today to come meet a complete stranger and we’re all connected by this syndrome, I said to my aunt ‘can you believe that you created this foundation. That you started connecting people 25 years ago. You had this dream and now it’s a reality’,” said MacDonald.
Before heading out, it was time for a group photo: but Sally just wasn’t feeling it.
“He’s like ‘I’m ready for this party to be over’,” Kent said jokingly.
But the night did end on a highlight, as the group screamed “Yay Sally!”
Naperville News 17’s Christian Canizal reports.
