Diagnosed with a little-known genetic disorder wehn he was 11 months old, Cole Walsh's family wants more people to know about the disorder.
A room full of laughter and bright smiles is hoped to shine a light on the unique struggles of a Plamondon family and a genetic disorder relatively unknown to most Canadians.
This Friday - tomorrow night - the Night of LoLs comedy event at Plamondon’ s Festival Centre will raise awareness for Williams Syndrome - a rare disorder affecting five-year-old Cole Walsh. The disorder was diagnosed in Cole when he was 11 months old. The genetic disorder takes on many forms, including a lack of elasticity in the body, developmental delays and heart troubles. Before the mid-1980s, Williams Syndrome was rarely diagnosed.
“It’ s very rare in Canada, but the numbers are starting to go up now because it’ s a fairly new disorder to be diagnosed. Now there’ s more knowledge about it,” said the youngster’ s mom, Bailey, who hopes the fun Friday event will bring people together to increase the awareness while having a good night.
Friday’ s Night of LoLs features comedians, including Edmonton-based funny man Sean Lecomber as the headliner. He’ s a Last Comic Standing finalist, a one-time guest on the Jay Leno TV show and a veteran of the Canadian stand-up comedy circuit.
“It’ s good to get out and do a fun community thing,” said Walsh. “We hope people come out and support us.”
The Walsh family, Cole, his mom and dad, a younger brother and older sister cope each day with the effects of the disorder, which is compounded by the fact that the young boy has also been diagnosed with autism. The combination has left Cole with limited mobility and very little verbal skills.
“It’ s challenging,” said Walsh, admitting that the rarity of the disorder can sometimes make the family feel somewhat isolated and alone with the challenges, but the community has provided some much-needed support. “This is an awesome small community. A lot of people know about Cole and everyone is pretty well supportive.”
But with the rarity of the disorder, the family spends a lot of time on facebook chat pages and websites with other families around the country and the world who are coping with Williams Syndrome. It’ s a connection that means a lot.
“Without them, we would be really alone. People here are supportive, but it’ s like with many things, people don’ t know exactly what you are going through unless they are going through it too,” Walsh said, explaining that funds from the Night of LoLs will go towards maintaining the Williams Syndrome network of families.
Tickets are still available for the fundraising funny night. Tickets are $40 and for sale at the Double L in Plamondon and the Brokerlink office in Lac La Biche. The price includes the comedy show, free appetizers and a dance. The event at Plamondon’ s Festival Centre starts at 7 pm. There is a cash bar for the over-18 show.
