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Crowdfunding campaign launched for family of orphaned B.C. girl with rare genetic condition

For one Ladner family 2020 has provided many more challenges than just COVID-19.

Heather and Gavin Fallow are in the process of adopting their brave seven-year-old granddaughter Sophia who has undergone six heart surgeries in her short life due to a rare genetic syndrome. The latest procedure came in March.

Two months later, her mom MaryAnn lost her battle with substance abuse, a tragedy that has seen an alarming number of victims across the province during the pandemic.

Sophia has been in the care of her grandparents since.

“She had a ton to deal with and it was really tough kind of watching from the sidelines,” said Rebecca Fallow of her late sister. “She was just going through so much more than most people would have to go through. I think the isolation was a big thing and not having that ability to be able to go to her regular group meetings.

“My mom has always been involved in Sophia’s life as my sister lived with them. At least that has been steady. We are all definitely trying. My parents have been rocks through all of this. Obviously it has taken a big toll on them, but it was never a doubt. Sophia is family and she is staying family.”
Sophia has been in and out of hospital since being born incredibly small with two holes in her heart.

She was rushed to the neonatal unit and underwent her first surgery soon after. She had two more heart surgeries and a blood infection before her first birthday.

It was after her fourth surgery when the family saw an improvement in her health and growth. It was beginning to become clear, however, that she suffered from hypotonia, and other developmental delays. The doctors were puzzled until after her fifth procedure when she was formally diagnosed with Au-Kline Syndrome. At the time there were just 17 cases known in the world.

“This year I have gotten into a Facebook group that is talking about trying to start a website about it. There really is just nothing and all over the world people are looking for answers,” continued Rebecca. “There are just so many unknowns such as life expectancy.”

Sophia is at least now able to attend school where she is receiving one-on-one learning.

“It’s just nice to see her in the school system. Regular curriculum is not the goal. She just loves to be around people. She is doing as well we can expect really. She is just full of love. She is always laughing and she is always smiling,” said Rebecca.

Knowing the responsibility her parents have taken on with Sophia’s full-time care and expenses, Rebecca has launched a GoFundMe Page that that has generated over $8,000 so far.

“I thought about it for a while. We don’t come from money and it’s hard to put it out there but I just want to give my parents something and make them feel they have support,” Rebecca added.