Barbecue to raise awareness for Angelman syndrome

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June 11, 2015 8:15 AM

Kent Fleming is hosting a barbecue fundraiser at the Lethal Motorsports Yamaha dealership on Monday, June 15, but it’s not so much the funds that he’s interested in raising.

“We just would love people to come down and maybe ask us some questions about Angelman syndrome if they have any questions about a family member or something,” he said. “If they don’t know what’s wrong with them, we’d be more than happy to answer their questions down at the barbecue.”

Instead of money, Fleming is focusing on raising awareness for Angelman syndrome, a rare genetic disease, which has symptoms eerily reminiscent of something else.

“One would be a very similar walk or jerky movements that are very similar to cerebral palsy,” Fleming said. “And that’s the most common misdiagnosis.”

Other typical symptoms of the condition include intellectual and developmental delay, epileptic seizures, sleep disturbance, love of water, frequent smiling and laughter and a generally upbeat demeanor.

Fleming, who works as a general contractor, also serves on the Canadian Angelman Syndrome Society (CASS) board. His son, Ty, was diagnosed with the syndrome at the age of two.

“We didn’t have a clue what anything was about that, because the doctors really hadn’t seen it very much in Lloydminster,” he said.

Ty, now nine, is currently enrolled at St. Joseph’s Elementary School.

“He’s the happiest kid in the world,” Fleming said. “He makes my day better every time I come home and see him.”

Since the diagnosis, the elder Fleming has twice participated in the Ride for Angels bike rally, riding from Lloydminster to Cold Lake to Wainwright all in one day. In the two years he participated, the rally generated $60,000 for CASS.

Now Fleming has turned his attention to awareness. He says that while misdiagnosis is a problem in and of itself, an incorrect label can lead to further issues for families.

“There’s a very real possibility that when you have one child with Angelman syndrome, if you haven’t had it diagnosed and you go to have more children, there’s a 50-50 chance depending on the way the chromosomes work that you can have another child with Angelman syndrome,” he said.

The Angelman condition is caused by a defective or deleted gene on one of the maternally derived chromosomes. Current treatments can help control individual symptoms, but there’s not yet one large treatment that handles most or all symptoms simultaneously.

As for Monday’s barbecue, Fleming guarantees that the burgers will be cooked to perfection with a little help from his friends at Bandit Pipeline, who are lending a barbecue rig, and Yamaha, who is supplying the food.

Any money that is raised during the barbecue will be donated to CASS. The barbecue will take place from 11 a.m. to 2 p.m., while Yamaha’s Motorcycle Power Tour showcase takes place the same day from 10 a.m. to 4 p.m.

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