Baby girl with Down Syndrome calls Airdrie home

Little Avery Harper is an inspiration to not only her fifteen thousand Team Avery supporters, but also to her mother, Amanda Weger. 

Avery was born over 10 weeks premature, being diagnosed with Down Syndrome at birth.  

The move to Airdrie came down to prioritizing Avery’s health. Being that she came a lot sooner than expected, Weger says the healthcare they needed just wasn’t available in Fort Mcmurray.  

The night of Avery’s birth, Weger had to be airlifted to the Alberta children’s hospital and that was reason enough for a move to Southern Alberta. 

In a Facebook post written ten days after Avery’s birth, Weger detailed some of the hardest moments during her pregnancy. Weger entailed how she feels failed by her healthcare system. She says that doctors had dismissed her initial sense of being pregnant and once discovered they also dismissed the chances of any genetic abnormalities. 

“We were actually told when I was pregnant that she doesn't have Down syndrome or anything like that. So, this was completely unexpected and we were obviously devastated because everyone wants their baby to be happy and healthy.” 

One thing Weger regrets doing was Google researching Down Syndrome immediately after Avery was diagnosed. 

“There is some very scary, out-of-date information that comes up and I had grown up with somebody who was highly dependent on others for her to be able to live. That's immediately where my mind went, is the worst of the worst.” 

Someone Weger has to thank is a nurse who she says was with her throughout their whole NICU experience.  

Weger says that this nurse, who is referred to as the “Grandma” of the NICU, kept her sane during the whole process. Pointing out that Avery was able to do many things that not many other babies could do. 

“She brought us down from level 10 panic, down to, you know, this is going to be okay. She kept saying she's going to be just like Joey Moss. She's going to be highly functioning, just like Joey.” 

Avery in the NICU.

Weger recalls the trips they would have to make on the highway every day to Edmonton. 

“Premi, first off, is a ton of appointments. With the Down Syndrome diagnosis as well, that's a lot of specialists that are involved, especially in their very first year of life. Financially, it was becoming a tax for us going back and forth.” 

Weger had started researching and looking into some of the support groups out there for Avery and she realized that living in Fort McMurray put them at a disadvantage to receive the healthcare they needed. Seeing other kids Avery’s age with Down Syndrome and receiving the medical attention that is required for the disorder really pushed Weger to make the jump out of Fort McMurray.  

“We were in the Ronald McDonald House for two and a half months until she was released from the NICU. That whole situation would have been so much easier if we had a NICU in Fort McMurray. We would have been going home to our own bed every night.” 

We were on a waitlist ever since she was born to get into occupational therapy, speech therapy, and physical therapy. Even now, she’s still on that waitlist. 

Avery and her best friend, Isla

Here in Airdrie, Weger is able to get Avery’s life started on the right foot. With access to different Down Syndrome Groups and an overall bigger community, Avery has the support and therapies she needs to thrive. 

Weger underlines how this pandemic has been hard for Avery and herself. Most, if not all, activities that she had moved here for have had to move either to Zoom or have been canceled until further notice. 

“Now it's just not the same type of connection. That’s my big frustration with everything that's happened with this pandemic.” 

One thing which resides with Weger is how little interaction Avery has had with other babies. Being isolated for two years really took that away from her. 

“We had to take her to the Children's Hospital a few months ago and when we were in the waiting room, she was frantically waving at all of the other babies. It just broke my heart because she doesn't get to go on playdates. We've literally been in our houses for her whole life.” 

Little baby Avery and her mother Amanda.

Not only has this pandemic put a wrench in Avery’s access to certain things, Weger says that her own mental health was greatly affected. 

In the midst of the pandemic, Weger had tried multiple times to get Avery in for different medical needs such as her RSV shot, one-year vaccinations, and bloodwork for her thyroid, but had no luck because Avery had a runny nose. She says, as a mother, it was frustrating. 

Weger started a Facebook page for Avery called ‘Team Avery Harper with thousands of followers all over the world. Her goal for the page is to help educate herself and other new moms who are raising a child with Down Syndrome. 

Avery and her twin birthday friend, Blake.

Weger thinks whether her page is to help those who might be struggling, or to be that shoulder someone needs, she thinks social media is a great outlet to stay connected to people in the Down Syndrome community. 

“We met another baby. We never ever would have met them without the page. She was born in Red Deer on Christmas morning and was a birth diagnosis Down syndrome as well, just like Avery.” 

With a page like Avery’s, you can see all the milestones she’s hitting and the amazing support she gets from friends and family all over the world. 

To support and follow Avery’s life journey, go to her Facebook page Team Avery Harper or check out Amanda Weger's Instagram and Tiktok to be inspired by this 14-month-old cutie. 

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