LOCAL FAMILY RAISING AWARENESS OF GAND
Jack and Hunter Farrington among fewer than 100 people worldwide known to have the syndrome
NORTH WALES » If you’re out and about at North Wales Borough’s Community Day event on Sept. 29, and see an adorable pair of identical twins at an information table, stop and say hello.
Jack and Hunter Farrington, and their mom, Kristy, father, Joe, and sister Paige, will be working to raise awareness of GAND Syndrome, a rare neurodevelopmental disorder that fewer than 100 people in the world are believed to have — with two of them living here in North Wales.
“We’re doing some raffle baskets, we’ll have a 50/50, I’m trying to set up some facepainting, and just helping to share the story of Jack and Hunter, and what our journey has been,” Kristy said.
Jack and Hunter were born in October 2014, about a month ahead of their expected due date, and at first appeared to be perfectly healthy, until the two started missing normal developmental milestones, like not sitting up until they were roughly a year old. An array of doctors and tests found few answers, until the twins were nearly 3 years old and still not talking, and the two were diagnosed with Childhood Apraxia of Speech, and were referred for genetic testing.
“That is a speech disorder where their brain knows what it wants to say, but their mouth doesn’t know how to say it,” Kristy said.
That testing revealed a mutation on a chromosome know as GATAD2B-Associated Neurodevelopmental Disorder, or
GAND Syndrome, a disorder Kristy said is known to affect fewer than 100 people worldwide, with fewer than 50 in the United States.
“They do have lots of energy. It’s more that they have global delays: they’re not your typical almost4-year-olds, but they progress each week,” Kristy said.
GAND is typically characterized by slower intellectual development, low muscle tone and limited speech, and nearly all cases are believed to be caused by a mutation in the GATAD2B gene that is new to those with the syndrome, not inherited from either parent, according to Kristy.
“One of the challenges we had in the journey to find an answer for Jack and Hunter was whether anyone in our family history experienced their symptoms before, which is no. This is a new mutation that Joe and I do not carry,” she said.
As the mother of the only set of twins known to have the condition, she has relied largely on a private Facebook group for parents of those with GAND, and the nonprofit charity Helping Hands for GAND, which supports individuals and families impacted by the disorder. The “Helping Hands” group provides parents with links to patient advocacy groups, resources on how to teach children augmentative alternative communication methods, and info on conferences and events where those impacted can learn more, and meet those dealing with a similar struggle.
“We’re definitely going to be setting up some more events in the future. This is kind of our first kickoff, and there’s a first GAND Awareness Day on Sept. 16, so we’re just trying to spread the word, worldwide,” Kristy said.
North Wales Community Day will be held from 11 a.m. to 4 p.m. on Sept. 29, on and around Main Street near Church Road. Kristy said she will have information on the syndrome available, will accept donations for the nonprofit, and the family will be there to meet and greet anyone interested in learning more.
“All proceeds will go directly to Helping Hands for GAND to fund research and treatment opportunities in hopes of finding a cure, so Jack, Hunter and all others affected by this disorder may have a brighter future,” she said.
For more information on GAND Syndrome, visit www.GATAD2b.org or follow @gatad2b on Twitter.