Western Nunavut community learns to see ability in Down syndrome

Brennan Koblogina-Pye, born with the genetic disorder Down syndrome, sits with his mother Clarissa Koblogina of Cambridge Bay. (PHOTO BY KELCEY WRIGHT)

Special to Nunatsiaq News

CAMBRIDGE BAY — When Brennan Koblogina-Pye was born with Down syndrome five years ago, doctors gave him a 25 per cent chance of survival. It’s not the kind of news parents want to hear.

“It was scary at first,” said Clarissa Koblogina, a support assistant for Grade 6 students in Cambridge Bay.

Down syndrome is a genetic disorder, typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.

“I didn’t know a lot about Down syndrome before he was born, but now from research and seeing him develop, I know we’ve been doing the right things with him.”

And one of those things has nothing to do with Brennan and everything to do with the community around him.

March 21 was World Down Syndrome Day.

But Kullik Ilihakvik elementary school in Cambridge Bay, where Brennan is a kindergarten student, dedicated the whole week to raising awareness around what it’s like to live with Down Syndrome.

Koblogina and the teacher she works with, Nathan Johnson, organized a project with the students during the school’s Down Syndrome Awareness Week.

Johnson started the week by reading the class a book entitled, “My Friend Has Down Syndrome.” Then, Koblogina shared her story about Brennan and then opened the floor to questions from students.

“They had lots of questions,” said Koblogina. “They were very interested.”

But it didn’t end there.

“The kids are going to do research on Down syndrome, and then the kids will present it to each classroom [at the elementary] and high school, for Down syndrome awareness,” said Koblogina.

There are more than 20 classrooms in the two schools combined, which means the information will reach over 300 students and faculty in those two Kitikmeot schools.

“I posted a picture on my Facebook that it was World Down Syndrome Day last weekend,” said Koblogina. “ And I got lot of people in the community who sent a lot of love toward Brennan through Facebook.”

Even small things are big accomplishments for Brennan: things as simple as getting his hands dirty. Due to sensory issues, he couldn’t get his hands dirty, but since starting school, he has been finger painting and dipping his hands into soft foods.

“He’s doing so good,” said Brennan’s father, Ches Pye. “Every time we have an [individual education plan] meeting, there’s no negativity. It’s all progress.”

That’s encouraging because Brennan had to struggle from the moment he was born.

“For the first two weeks it was very intense,” Koblogina said.

“He was hooked up to everything from his nose, his head, his chest, his hands, even his feet. But he’s healthy now and he’s flourishing at school. We are so proud of him and what he’s accomplished.”

Now, Brennan play-wrestles with his brothers, Tyrell and Benjamin, communicates what he wants and is even making friends at school.

“At first, Brennan would kiss everybody at school to say, ‘Hi.’ Now he’s learned to give everybody high-fives,” said Koblogina.

“It’s been a long but successful road with Brennan. I wouldn’t have it any other way.”

With a population of about 1,500 people, Cambridge Bay is home to at least two students who have Down syndrome — Brennan and a student at Kiilinik High School — so its doubly important to educate the community, Koblogina said.

And there are other Kitikmeot children with the disorder as well.

“From what I know, in Taloyoak there in one [who is] three and there is one teenager in Kugaaruk,” said Koblogina, who is a member of the Edmonton Down Syndrome Society and the Canadian Down Syndrome Society.

Koblogina has ordered bracelets from the Canadian society to give to her students with the slogan “See the Ability” written on them to reinforce the theme of the week.