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Forming Alliance: Children with rare disorder meet in person

Photo submitted to Times Observer Naka King with daughter Rylan and Shannon Davison with son Tucker.

What are the odds?

What are the odds that, with only 1,300 worldwide diagnosed cases of Dup15q — a disorder affecting the genetic material on chromosome 15 — that two families with the same diagnosis would live within an hour of each other?

No, I’m actually asking. My publisher just tried to explain to me how to calculate it but I have what amounts to a philosophy degree so he may as well have been asking the family dog if she wanted to discuss string theory. He lost me at “okay, so…”

The point is, it’s not likely that two people with such a rare genetic disorder as Dup15q are going to live close enough to have impromptu lunch dates. But that is exactly what happened for one pair of moms whose children have Dup15q. Naka King’s daughter, Rylan, and Shannon Davison’s son, Tucker, both have Dup15q.

The Kings are from Sugar Grove. The Davisons are from Olean, N.Y.

The two moms had never met in person.

The Dup15q Alliance is an online community that has been instrumental in helping Naka adjust to the diagnosis and gain a much needed sense of understanding from other families living with the rare disorder. But with the diagnoses so few and far between, not to mention spread out around the entire world population of over 7 billion people, it’s hard to get face time with other people in your shoes, said Naka.

“It’s hard to put into words,” she said. “When you are given a rare genetic diagnosis that (even) the geneticist knows very little about, it’s scary. You automatically feel isolated.”

When a geneticist isn’t familiar with the syndrome — the set of behavioral and physical symptoms that come along with the disorder — said Naka, “how will your local doctors be able to treat her?”

That’s just one of the numerous and sometimes overwhelming concerns that Naka says her family has navigated since Rylan’s diagnosis. Now six, she said Rylan is thriving. And so is the family, thanks to the support they’ve gotten through friendships made via the Dup15q Alliance.

Davison, who met up with King along with her son Tucker, agreed: “Having another family with the same diagnosis helps us to feel less isolated and that someone truly understands every aspect of what you go through daily. They give you guidance through their own experiences.”

The online community, said King, is a place to feel “like you belong; it’s home.”

While King and Davison have been interacting online for over a year, said King, “we just couldn’t line up our schedules to meet in person.” The two did decide to team up with seven other families in the community, however, for a shoe drive fundraiser to benefit the Dup15q Alliance. Finally, on Tuesday, she said, it was time to bring their friendship into real life.

“Meeting in person was like I’ve known them all along,” said King. It was like “just having lunch with an old friend. Our children are so unique and yet so much alike.” Medical concerns, upcoming tests, current challenges, and summer plans were shared between the mothers as Tucker and Rylan, as children do, shared a plate of fries and a hug.

The shoe drive is an effort to collect gently used shoes from now through July 31, said King. “Any shoes and size, youth to adult, in usable condition,” are being sought. For their efforts, the Dup15q families involved will raise 40 cents a pound for the total weight of shoes collected. The goal is 100 bags of shoes, said King. The money will benefit the community that brought them together – and that funds research efforts that benefit not just the Dup15q syndrome but also the myriad individual conditions represented within the syndrome – said King. The shoes will be sent to micro-entrepreneurs in developing countries.

Locally, shoes are being collected at Forest Heights Golf Experience on Mitchell Road in Jamestown, N.Y., the Hatch Patch in Warren, or by contacting King directly at nakaking13@gmail.com. Shoe drive progress can be viewed by visiting www.dup15q.org/king.

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