Whitecourt has an angel, and his name is Hayson

Hayson Lapointe is a smiley three-year-old boy. One of his favourite places to hang out is the small gazebo beside the splash pad at Festival Park. Along with his bright yellow walker, emblazoned with his name across the back bar, Hayson loves to explore the grounds, flashing his gigantic smile to anyone who walks past.

Hayson has Angelman Syndrome (AS), a severe neurological disorder. For short, many people refer to AS people as angels. Some of the syndrome’s characteristics include developmental delays, epilepsy, and motor coordination and balance struggles. Angelman’s is a seizure disorder that can be hard to treat and affects one in 15,000 births.

People with AS have an average life expectancy but need life-long support. With no cure known, and no treatments, families focus on intense therapies to help build functional skills and improve quality of life. Financial help for families is life-changing, but that kind of support requires funding. The Angelman Syndrome Foundation of Canada plays a significant role in supporting families and people living with AS.

Kirsten and her husband, Doug, have yet to use funding support from the foundation but do plan on it soon. “We haven’t used them because we just aged out of AHS and are now in the school program. There are lots of resources that we don’t know about yet as he’s getting older. We plan to apply to the fund in October for a safety sleeper bed. It’s a fully enclosed bed that keeps him safe at night in case he has seizures and so that he doesn’t get out of bed and get into things,” explained Kirsten.

Hayson was first diagnosed with AS when he was fifteen months old. “At the beginning of COVID, my husband and I bought a house, and my sister came up to watch Hayson. She has four children, so she was experienced, and she said, you know, he’s nine months and not sitting up. I said, I know, I have to get it checked out,” recalled Kirsten.

A doctor visit led to a pediatrician and then to a geneticist, who tested Hayson. “By the time he was about a year, we got results that it was either Prader-Willi or Angelman’s Syndrome. It’s (PW) the same area in the fifteenth chromosome but a variation. Further testing was done, and we discovered it was AS.”

Before the diagnosis, Kirsten said she had never heard of AS. Now that she does, she wants more people to know about it. “It’s important that the community knows we have an angel here. There was a foster child in the community that had AS, and they were able to play together for a bit. But Hayson’s the only one now. It’s really rare.”

On Saturday, June 3, Hayson, his mom and dad, and their family and friends will walk in the 2023 Angelman Strong Walk to help raise funds for the AS Foundation. The walk will take place at the Edmonton Valley Zoo. “We went on the walk last year. In Northern Alberta, eleven angels were able to come, but there were probably 250 people that came and walked. It’s a small community, but they are all amazing people, and they are so supportive.”

Kirsten said anyone can help raise funds, whether they want to walk or not. “We fundraise just like the MS or cancer walk, and it goes towards AS clinics, research and to the families. The families can apply twice a year to the AS fund and request funding for medical equipment like iPads to help with speech. Everybody that registers creates a team. Usually, the angel’s family creates a team and then gets family or friends that want to join and walk. Anyone on the team can fundraise, and anyone can donate.” The link for donating is at the bottom of this article. Be mindful of upper and lower case letters when typing.

“Hayson’s non-verbal. He does suffer from seizures, but he’s happy 95 percent of the time. He cried maybe, five times, with actual tears, by the age of two,” explained Kirsten. Some children with AS learn sign language, but other options are available. “We are working with a POD book. It’s about an inch thick, and you can make sentences from the pictures. It’s “I want to,” and then you flip to the section you want, like, “outside,” “have a bath,” or “go to sleep.”

Kirsten said she is grateful to anyone donating to the fundraiser. They hope that with consistent support and therapy, Hayson will be able to walk on his own without a walker. “We know quite a few angels that had a walker for a few years, and they started around the same age as Hayson. They are now nine or ten and are walking independently. So, that’s our goal. We want to get him there.”

Hayson’s fourth birthday is coming on July 13, but he might’ve already received the greatest gift he could’ve asked for. “His five-month-old sister, Emery, is his favourite person,” smiled Kirsten. If residents spot Hayson in his yellow walker, name on the back, out at his favourite spot at Festival Park, be sure to say hello and flash him a big smile because you’re guaranteed to get one in return. To donate to the Angelman Syndrome Foundation of Canada and support angels like Hayson, visit https://www.canadahelps.org/me/nZMN9f5V. Be careful when typing as the upper and lower case letters have to be exactly as shown to work. As of Saturday, May 6, Hayson’s fundraiser page shows they’ve raised $270 out of their $500 goal. The campaign ends on May 31.