Aiden Gilbert is a happy 11-year-old from South Jordan. He likes to spend time with his family, and he is very social.
“He is a really fun kid,” said his mother, Michelle Gilbert. “It’s just a real joy to interact with him.”
When he was almost 2 years old, Aiden was diagnosed with Angelman syndrome, a rare neuro-genetic disorder that occurs in 1 in every 15,000 live births, according to the Angelman Syndrome Foundation.
AS presents a number of physical and cognitive challenges. The syndrome manifests itself differently based on the individual, but characteristics often include developmental delay, lack of expressive communication, seizures, and difficulty walking and balancing, according to the foundation’s website.
Eileen Braun, executive director of the Angelman Syndrome Foundation, said there is no cure yet, and individuals with AS require constant, lifelong care.
Like many with AS, Aiden has a hard time walking. But with the support of friends and family, that won’t stop him from participating in the upcoming Angelman Syndrome Foundation’s National Walk on May 21. Walks will take place all over the country that day, including in Riverton.
Braun, who has a 25-year-old daughter, Kaitlin, with AS, started the walk in 1999. She said the purpose of the walk is to raise money for the foundation, and the largest portion of that money helps fund AS research.
The foundation is the largest nongovernment funder of AS research and has funded over $8 million in research, mostly since 2005, Braun said, adding that much of that money has come from walks. Some money also helps fund other aspects of the foundation’s mission, which is primarily to support families who are affected by AS.
The walk also raises awareness for the syndrome, which is often misdiagnosed as cerebral palsy or autism, according to the foundation’s website. It also gives families with members affected by AS the opportunity to meet together.
“My favorite part of the walk is really getting to see and talk to all the families,” Braun said. “I see the new families and get to talk to them and see the relief on their face to know that here are all these other families and they’re doing OK and we’re going to be OK too.”
When Aiden was first diagnosed, his family drove to Las Vegas to participate in a walk and then to Denver before Michelle and other families started the first walk in Utah in 2009.
The walk in Utah this year will be held in Riverton at Kauri Sue Hamilton School, 2827 W. 13400 South. Gilbert, who works full time as a software manager, is the site coordinator and has spent many hours coordinating the event.
Registration begins at 9 a.m. on May 21, and the walk will begin around 10 a.m. Gilbert said the walk will be about a mile. After the walk, families will be able to eat and socialize together.
Everyone is invited to participate in the walk and support these families, Braun said.
“They’ve got a tough life in front of them,” she said. “And these families are absolutely amazing. Sometimes I think they make it look too easy, because I know how hard it is.”
And although it is a challenge, Gilbert said they have found so much joy with their son.
“I’ve learned that life doesn’t always turn out the way you expect it to and to embrace that,” she said. “And that’s where you’ll find some joy.”
To register for the walk or to donate, visit angelman.org/walk.
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