SOUTH DENNIS – A small group of teachers hopes that those who see someone wearing silly socks, one high and one low, May 5 will think about providing equal access and resources to individuals with disabilities.
As part of a program called “Dream Like Drew,” Dennis Township School teachers Alison Curvan and Samantha Matthews hope the activities will give students and others a chance to cheer on Drew Eykyn, 8, and put a face to a rare genetic disorder that affects about one in 50,000 births.
“When you meet Drew, there is something magic about him,” said Curvan, a South Dennis resident and elementary school teacher. “When the kids see him, they see a little boy just like them, who wants to do the same things. He is a poster boy for the world who touches your heart. We want to raise awareness of inclusion for all individuals with disabilities.”
Eykyn, the oldest child of Kasey and her husband, Mike, was born with a genetic disorder called Cri du Chat syndrome, a French term for “cat cry” or “call of the cat,” referring to the high-pitched, cat-like cry of infants affected with the disease.
It is a disorder in which a variable portion of chromosome 5 is missing or deleted. Symptoms vary, depending on the genetic material’s exact size and location.
Silly socks, one high and one low, represents the full and partially deleted chromosomes that occur with Cri du Chat.
In Eykyn’s case, he is walking and says a few words, but also uses sign language and a dedicated speech device called a NovaChat machine. He is also learning to read.
He receives behavior therapy at home.
“He acts younger than other kids his age, but he is very smart,” his mother said. “It takes him a little longer to do things.”
She said they were unaware of any issues during her pregnancy, although a few “hiccups” could have indicated problems in hindsight. After his birth, Eykyn couldn’t feed correctly – suck, swallow, breathe – which was a warning that triggered doctors to seek additional testing and help.
Eykyn learned to feed using a special bottle that allows a baby to suck a small amount, so they breathe in between.
“About a month later, the geneticist gave us the results of his testing,” his mother said. “He did have a cat-like cry, but the geneticist never had heard him cry. We were first-time parents, so we were clueless. We got early intervention right away, as well.”
Genetic testing of both parents showed neither one had the disease. Two younger children also don’t have the syndrome.
“Kasey and I were pregnant about the same time,” Curvan said, who was also Eykyn’s mother’s mentor as a first-time teacher, “so we share a special bond.”
That bond grew as the Dennis Township schools and community “adopted” the Eykyn family (who live in Egg Harbor Township), with their support. Four years ago, they started the Dream Like Drew program, which expanded into other school districts.
At Dennis Township schools, besides wearing silly socks, this year’s theme is “inclusion rocks,” and students will paint rocks with a message before placing them throughout the community. They will also “Rock the Rec,” with outdoor activities at the community recreation center.
“In the past, we have worn t-shirts, opportunities to meet Drew, and had a parade in his honor, with all the kids cheering him on with signs and his favorite Oscar the Grouch,” said Matthews, of Middle Township. “It’s like a spirit day at the schools. It’s been a bit crazy of a school year this past year with Covid, but we plan to have several activities to teach kids about inclusion. It’s a chance to teach our kids about making a better world.”
Eykyn’s mother said her family is one “who really doesn’t like attention, but we love being able to talk about how amazing life is with Drew. There’s no way to tell just how he will continue to be affected, so we focus on the genes that are there.”
Community organizations or districts wishing to participate in the program can email Curvan, at acurvan@dtschools.org, for more information.
To contact Karen Knight, email kknight@cmcherald.com.
