WATCH ABOVE: A central Alberta girl who was diagnosed with a fatal genetic disorder is getting a bit of help from her community. As Eric Szeto reports, a massive renovation is underway to her family’s home.
EDMONTON – It’s like an episode of ‘Extreme Makeover: Home Edition.’ When the McGregors return home in two weeks their central Alberta house will look a lot different, and be much more accessible for their terminally ill daughter.
A group of volunteers has come together to renovate the Blackfalds home with the hopes of making life a little bit easier for Katharina McGregor and her family.
The 10-year-old girl was diagnosed with Niemann-Pick Type C (NPC) in October 2012. The rare genetic disease stops Katharina’s body from metabolizing cholesterol properly; instead of it gathering in her heart and arteries, cholesterol builds up in her liver, spleen and brain.
“As it gathers in her brain it shuts down,” Katharina’s mother, Terese McGregor explained. “She will eventually not be able to walk or talk or eat or do anything.
“Since Katha’s diagnosis they’ve been telling us that one seizure will take everything.”
Terese says Katharina doesn’t completely understand her illness, but “she understands enough.” And her daughter – who she describes as friendly, outgoing, funny and loving – is doing much better than her doctors thought.
“She brightens up your day at every possible opportunity,” Terese said Saturday. “I can’t tell you how many times I wake up to her singing in the middle of the night and it’s just the most amazing feeling in the world.”
With two younger sons to care for, the McGregors have their hands full and they’ve recently been challenged by a few other obstacles. Terese’s husband was laid off in March and while he has found temporary work, it keeps him out of town three weeks at a time. In addition, Terese has undergone back surgery and can no longer pick up her daughter to help her around the house.
“A huge stress has been, ‘How are we going to get her in the house? How are we going to bathe her?'”
Through their challenges, though, the McGregors have remained extremely positive.
“There have been times where I have broken down, of course,” said Terese.
“There’s not an option to just lay down and accept it because then we’re missing out on what we have left. We have to be positive.”
Their positive outlook is why the family was nominated and chosen to be the 2015 Neighbours Project. Neighbours is a central Alberta organization that focuses on local families or individuals facing overwhelming circumstances that could use a bit of help from their community.
“They’re an amazing family,” Ronda Ziakris, project coordinator with Neighbours, said of the McGregors. “We have helped other families in similar situations but not with an actual terminal diagnosis, and so it really makes you realize life is short and we need to count our blessings when we have them.”
Over the next two weeks, a crew of volunteers will be tirelessly working to renovate the McGregors’ home. An accessible bathroom and main-floor laundry room are on the to-do list, as well as a lift to get Katharina’s wheelchair into the bi-level.
Katharina’s younger brothers’ room will be turned into an accessible main-floor bathroom, so the boys will be getting a brand new Super Mario-themed bedroom. Katharina will return home to a Disney Frozen-themed bedroom.
If the project were contracted out, it would cost about $60,000.
“This is something the family cannot afford,” said Ziakris. “People want a way to give back and I think when an opportunity and an avenue is opened to them the flood gates open and people just want to be part of something good.”
The McGregors could not be more appreciative of the gift they’ve been given by their community.
“It’s amazing. It’s life changing and we couldn’t do it without them. It means the world to us,” Terese said.
“When you get a diagnosis like this you don’t think there’s going to be positives. We’ve had such an outpouring of love from neighbours and from family and friends, and it really has shown us that this world isn’t nearly as dark as we think it is. There’s so much love left in this world.”