Avery Norris, 11, lives with Rett syndrome. (Skate for Rett/Facebook)

By Derek Cornet

Genetic Condition

Rett syndrome awareness event Sunday in La Ronge

Oct 25, 2019 | 12:56 PM

Looking to raise awareness about Rett syndrome, the Norris family is inviting residents of the tri-communities to a special event Sunday.

Between 3:45 p.m. and 5 p.m. at the Mel Hegland Uniplex, the rink will be open for a public skate that will include members of the La Ronge Ice Wolves. It’s being held to spread the word about Rett syndrome, a rare genetic condition which 11-year-old Avery Norris was born with. The event is being organized by family friend Audrey Boyer, who stated October also happens to be Rett Syndrome Awareness Month.

“It was quite frustrating for the parents in first trying to figure out what the problem was, but eventually it was diagnosed as Rett syndrome and we just want to make sure we bring awareness to what it is,” she said.

“[We] also want to let people know what they can do about it as far as supporting research and supporting the Norris family as they go through the day-to-day struggles and the up and down moments with dealing with a child with special needs.”

Rett syndrome appears mostly in females and becomes apparent in the first couple of years in life. Those with the condition initially develop normally, but then slow growth occurs, as well as other issues with language, coordination, seizures and repetitive movements. In Saskatchewan, Boyer noted there are 18 other females who are living with the condition.

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Boyer also mentioned events to raise awareness about Rett syndrome and to assist the Norris family occur sporadically. For instance, last year a fundraiser was held which included supper with the Ice Wolves. She added they had expected about 100 people to attend the event, but ultimately nearly 300 people did.

“This will be more of an awareness,” Boyer said. “There will be a few things for purchase that will go towards Avery and her fund, but this is mainly an awareness campaign.”

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derek.cornet@jpbg.ca

Twitter: @saskjourno