Kelowna class goes green for Phelan-McDermid Syndrome day

There was a sea of green in a Grade 3 classroom at Casorso Elementary School Thursday as students and staff donned green bandanas.

The bandanas were handed out by Sam Michiel whose son Lucas is a student in the class.

Lucas lives with a rare genetic condition called Phelan-McDermid Syndrome (PMS).

“Lucas is missing part of his chromosome,” Michiel said.

The condition causes developmental and speech delays.

It’s so rare, Michiel said that only about 2,500 people worldwide are believed to be living with it.

Oct. 22 marks World Phelan-McDermid Syndrome Day and every year, Michiel puts in efforts to help raise awareness.

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This year, she decided to bring her awareness campaign to Lucas’s school.

“I think absolutely it helps children understand what Lucas is going through on a day-to-day basis but it also helps them develop that empathy and understanding of others,” said school principal Jared Birkeland.

Michiel said it’s especially important to raise awareness about rare conditions, such as PMS, to advocate for improved access to funding.

She said when Lucas was diagnosed with PMS when he was just a year and a half old, he was denied support funding despite enduring major challenges.

“My son couldn’t walk by the age of three. He couldn’t walk, he couldn’t talk, he couldn’t feed himself. What’s more frustrating than anything else is that you are denied help, support, assistance because it’s not well-known,” she said. “It’s almost like ‘we don’t understand what you have so … we can’t help you.'”

It wasn’t until about a year later when Lucas was also diagnosed with autism that he finally secured funding, something Michiel said is wrong.

“What difference does it make if it’s Phelan-McDermid or autism?” she said. “We should all be treated fairly no matter what our title is, no matter what we have. We should all be treated fairly.”

Michiel plans to press on and continue raising awareness for years to come.

“I feel unless you’re personally affected by something you tend to look away … unless you’re affected by it then you’re more willing to do something,” she said. “So I know it’s hard to keep going every year trying to raise awareness but I’ll probably never stop because it means so much to me and I know that other families will benefit from that.”

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