Everything about Avery Kirby’s little life has been nothing short of a surprise.

“Avery is planning to do everything on her terms,” says Mom Amanda Weger. “She’s shown us that from day one.”

Amanda wasn’t planning to have children, and found out that she was pregnant with Avery when she was 17 weeks along. 12 weeks later – after Amanda was airlifted from Fort McMurray to Edmonton – Avery made her unexpected arrival into this world, on Christmas Day, at only 29 weeks gestation.

One week later, on New Year’s Eve, Amanda and her partner Dwayne learned that Avery has Trisomy 21, also known as Down Syndrome.

“There are a lot of complications that can come from having Down’s that, so far, tests are showing that we’re free from,” Amanda says, “so it looks like Avery is doing Down’s on her own terms as well.”

Amanda and Dwayne expected to be in Edmonton for Avery’s due date of March 6, but they didn’t expect to be there before Christmas.

“We were told there was likely not going to be a spot at the Ronald McDonald House and we were so grateful when we got a room on Boxing Day, as it’s been one less thing to have to worry about.”

“It’s an escape, a home where things can be more normal,” Amanda says of the House. “It’s a haven or retreat, just to get away from it all.”

Living five hours away in Fort McMurray means that Amanda & Dwayne really appreciate being able to stay so close to each other, the hospital, and their new baby girl.

Dwayne was able to take a leave of absence from work, in order to focus on his family.

“If we were having to pay for a hotel,” Amanda says, “something like this can financially ruin you.”

“Having a place where Dwayne could be here in a moment’s notice – if you couldn’t be at the Ronald McDonald House, and you couldn’t afford a hotel, you’d be driving back and forth,” she says. “And what if something happens? It’s five hours away.”

The family checked out after 60 nights in the Edmonton House, but with Avery’s diagnosis, Amanda & Dwayne have been told to expect to spend a lot of time in Edmonton over the next few years.

“My intent is to do a big fundraiser for Ronald McDonald House when things get back to normal,” she says.

“I can’t imagine people having to go through this and not have the Ronald McDonald House.”

It’s an escape, a home where things can be more normal. It’s a haven or retreat, just to get away from it all.”