'She's full of love': Fundraiser for Delta girl with rare genetic syndrome who lost parents to the overdose crisis
VANCOUVER -- When Rebecca Fallow thinks of her seven year-old niece Sophia, the first thing that comes to mind is her laugh.
“She’s got the most contagious laugh ever,” Fallow said. “She’s full of love. She loves everybody.”
The little girl has already been through a lot in her life, including six heart surgeries, the first when she was just a few days old. Sophia was born with two holes in her heart, and in 2018 was diagnosed with a rare genetic condition called Au-Kline syndrome.
“She had hypotonia, which is loss of muscle tone, and she’s very wobbly, and a lot of developmental delays,” Fallow said, and added Sophia may be one one of only three people in Canada with the condition. “It was years before I even found any literature on the internet.”
In March of this year, Sophia underwent her sixth surgery. Fallow said she always shows remarkable resilience.
“She’s always been a trooper. She takes it like a champ,” Fallow said.
Sophia’s grandfather Gavin agrees.
“She’s amazing for what she’s gone through,” he said. “She’s just been an inspiration for us, the stuff she puts up with.”
In May, the family suffered a tragic loss. Sophia’s mother Mary-Ann passed away at the age of 28 of an overdose, after struggling with addiction and chronic pain for years. Sadly, Sophia’s father Kevin also lost his life to an overdose just before her first birthday.
Fallow said her older sister was kind and highly intelligent.
“I want people to know my sister was a human being. That she was much more than her substance abuse,” Fallow said. “She wanted the world for Sophia and she wished she could give her more than she could.”
Sophia’s family said they tried to find help and support for Mary-Ann for years.
“We went to doctor after doctor, to hospital after hospital, and half the time as soon as they found out it was opioids it was just get her out of here. They’d give her a prescription or they’d turn her away, we don’t deal with that,” Fallow said. “And I think too when you’ve got someone in that position, and they’re reaching out, even if it’s not a whole hand, it’s just a finger, any turning away is so discouraging, that really puts them in a place where they don’t have hope.”
Fallow’s mother Heather said there needs to be a better system for people with addiction or mental health issues to seek help: a place where someone will be there to really listen to them.
“Not just give them lip service,” she said. “But they’ll really, really listen and try to help that person so that they don’t have to lose their children or their parents or whoever. Because there’s no greater pain in this world than losing a child.”
Fallow’s parents are now in the process of formally adopting Sophia, and Fallow decided to set up an online fundraiser to help them with expenses. She didn’t tell them right away, but instead surprised them with the news about a week or so later.
“My biggest hope is just to give them a sense of people there to support them, and sense of feeling appreciated and like they’re doing a really good thing, cause they are,” Fallow said. “And just to give them hope.”
By early afternoon on Tuesday, Sophia’s Support Fund had raised $9,800 of its $15,000 goal.
Fallow’s father said the unexpected show of support has been amazing.
“I’ve got to say thank you to anybody who puts anything out there,” he said. “And for my daughter to even do it, she’s an amazing gal.”
Sophia will have another major surgery ahead of her in the future. But her family just wants her to be able to live her happiest, and best life.
“She’s a happy girl. She’s a loving girl,” said Sophia’s grandmother. “She’s the light of my life. I adore her.”