Teacher Laura Mackay holds her four-month old daughter Emma at her home in Smithers on Oct. 25.

Teacher Laura Mackay holds her four-month old daughter Emma at her home in Smithers on Oct. 25.

Community support crucial for living with Down syndrome

This Nov. 1 to Nov. 7 is Down Syndrome Awareness Week.

A year ago, Laura Mackay says it wasn’t even on her radar.

But that was before doctors told the mother of five that her youngest, Emma, would be born with Down syndrome.

“I didn’t eat, I didn’t sleep,” she said.

The news came just days after doctors told Mackay that Emma would need open-heart surgery. About 40 per cent of babies with Down syndrome are born with a heart defect.

“It was terrifying,” she said.

Emma is now four months old—a brightly blue-eyed girl. She is set to have her surgery in early December.

Mackay is anxious to have the operation finished, but she no longer feels as sad or scared as she did those first few days after Emma’s diagnosis.

That is in no small part due to the advice and emotional support Mackay has received from other Bulkley Valley families living with Down syndrome.

Anita Clegg is another mother in the informal group. Her son Jesse, who also has Down syndrome, is now in high school.

Clegg tried to home-school Jesse for a year, but he asked to go back to public school.

“They’re just like other people their age,” Clegg explained. “They’d like acceptance, they’d like to be employed, they’d just like to have a normal life.”

Smithers is a place where that can happen, said Clegg.

On some Tuesdays, Jesse and some other kids in the group go to movies at the Roi.

The theatre staff know them well, said Clegg, and so do people at the Smithers Bowling Lanes—another favourite spot for a night out.

And if Jesse or other young people with Down syndrome are seen walking alone during the day, Clegg said people in small-town Smithers know to ask if everything’s all right.

“We live in a wonderful community for that. It gives them a little bit of a safety net.”

Down syndrome certainly presents people with challenges. Along with some level of intellectual delay and a high risk of a heart defect, it may also bring some loss of sight or hearing.

But people like Laura Mackay are finding that along with those challenges, Smithers offers lots of support—whether it’s from someone who volunteers to train the next team of Special Olympics skiers or from a fellow parent who arranges a chat over coffee.

This Nov. 1 to Nov. 7, Mackay is  joining in to mark Down Syndrome Awareness Week.

“This is a real new journey for us,” she said.

It is difficult, she added, but less so because people in the community are so well aware of what living with Down syndrome is all about.

“I’m being mentored by beautiful people in this valley who won’t let me walk this path alone.”