October 22 will now be known as Phelan-McDermid Syndrome Awareness Day in B.C., thanks to a Kelowna mom who wanted to show support for her special-needs son.
Sam Michiel has been working on establishing the proclamation for more than a year. On Friday, the province informed her of its confirmation.
Michiel said she couldn’t be more excited for what this means for her son, Lucas, and others with this rare syndrome.
“Honestly, I’m so thrilled. I’ve worked so hard for this,” said Michiel, adding she wants to bring awareness to the syndrome, hoping eventually for a cure.
“I believe that the more people who know about Phelan-McDermid Syndrome, because it’s so rare, there’ll be more help for him. There’ll be more compassion,” Michiel told Global News.
Phelan McDermid Syndrome is a rare chromosomal condition that causes delays in mental and physical development, such as walking or speaking. It affects only about 1 in 5 million people, according to Michiel.
Green is the colour of the proclaimed day, and Michiel is encouraging everyone to shine green lights outside of their homes to show support.
She “wants the whole world on October 22 to be lit up green, and to wear green clothes to make everyone be aware of what it is.”
Having not much time to prepare this year, she is hoping to spread the word to better prepare everyone to increase awareness on Oct. 22 next year.