A little lift when they need it most
Tori loves to dance. She loves baby dolls, unicorns and lipstick. This six-year-old is always smiling, says her mother, Amanda.
And ever since Tori was diagnosed with aplastic anemia, a rare blood disorder caused by failed bone marrow development, her playful spirit has carried her family through some of their most difficult days.
“She’s always happy, always singing and dancing. She doesn’t let anything get her down,” Amanda says. “She keeps us going.”
The first signs of trouble with Tori’s health were frequent bruising, followed by nosebleeds. Her parents took her to their local hospital, which quickly transferred her two hours away to the Janeway Children’s Health and Rehabilitation Centre in St. John’s, Newfoundland.
“We were just waiting and waiting,” Amanda says. “She wasn’t getting any better, but not any worse either.”
As Tori receives treatment to improve her blood cell counts, usually in the form of transfusions, her father, James, often makes the four-hour round trip between St. John’s and Branch, where their older daughter Karen lives. With both parents putting their jobs on hold to care for their youngest daughter, the costs can be crippling. So when Amanda discovered Irving Oil’s Fuel the Care program could help manage their travel expenses, it lifted a huge burden, she says.
“It’s a big relief,” says Amanda. “There are a lot of stresses, and this is just one less stress.”
Through Tori’s challenges, her spirit remains strong. “She amazes me,” her mother says. “I’m not a crier, but sometimes when I get to myself, I do, because it’s really hard.”
But Tori “just breezes through it,” she says. When the weather is warm, and most children are on the beach or playing with friends, Tori often must stay behind. “She can’t do any of it right now, but she doesn’t complain. She just grins and bears it.”
Amanda says the entire process has given her a new appreciation for patience and for good health.
Through it all, Tori continues to dream of brighter days, of a future as a scientist, a veterinarian or some other exciting career. Because through her eyes, the world is full of hope.