Devoted parents, Shaleena and Garrett, had no idea they would need to rely on HSC Children’s Hospital for not one but two of their children.
Shaleena and Garrett live in Brandon with their three children — Brie, Aria, and Cole, but they’ve had to make countless trips to Winnipeg for appointments, hospital stays, and treatment.
“Our girls were growing up as smart, happy and healthy children. We never suspected a thing was wrong,” says Shaleena.
At 18 months old, Aria began to lose every milestone she had. She couldn’t sit up, talk, or walk and local doctors didn’t know why. Shaleena and Garrett took Aria to a doctor in Winnipeg and were referred to the only hospital that could give them answers: HSC Children’s Hospital.
Within a week, Aria was admitted, and had many tests including bloodwork, urine tests, ultrasounds, a spinal tap, echocardiogram, and eye exams. Everything kept coming back normal, but then an MRI showed changes in her brain.
The family had genetic testing done and discovered that both Shaleena and Garrett are carriers of a genetic mutation called ARSA, and Aria had inherited a rare and fatal disease called Metachromatic Leukodystrophy — a rare genetic disorder that affects the brain and spinal cord.
As the year went on, Aria needed a wheelchair, neck brace, wrist braces, leg braces, hand splints, a chest therapy machine. Finally, palliative care came to make an end-of-life plan.
“I’m sure you can imagine how devastated we were,” says Shaleena. “And although our lives have been more difficult than most — our daughter was cared for so incredibly well by all of the amazing people at Children’s Hospital. They truly went above and beyond to make sure that Aria had the best possible care — and to take care of us, too.”
At the same time Aria was initially taken into hospital, Brie became ill too. One day Shaleena and Garrett noticed a huge lump on her cheek and a swelling on her jaw in front of her ear. After an ultrasound, CT scan and biopsy, they learned Brie had a rare form of bone cancer.
“You can imagine how the days and months blurred into each other. And we had a new baby as well,” says Shaleena.
Brie needed chemotherapy and an extensive reconstructive surgery. Then, on September 13th of 2022, Brie had her last cycle of chemotherapy.
“She got to ring the bell and we had an awesome ‘no more chemo’ party!”
Both girls are home now. Brie is in remission and is active at school and in gymnastics. She’ll continue to see experts at HSC Children’s for check ins for a long time.
Aria is at home too, where Shaleena and Garrett continue her complex care.
“We are making the most of every day we have with Aria,” says Shaleena. “And we cannot find the words to say thank you for the staff in every department who care for her, and Brie, and our whole family, so lovingly.”
Shaleena says her family is grateful to every supporter of Children’s Hospital who has ever made a donation to fund life-saving equipment and the support programs that families rely on.
“Please know that in the good times and the hard times, your love and care is felt throughout every hallway and room of this hospital. By every child and family who spends time there.”
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