A Burnaby teenager is one of the young B.C. residents who’ll be sharing her story for Variety Week.
Variety – the Children’s Charity and Global BC are teaming up for Variety Week from Monday, Sept. 14 to Friday, Sept. 18.
Throughout the week, Global BC newscasts will be showcasing the work that Variety does to help children with special needs and their families.
Among the young people who’ll be highlighted is 15-year-old Scarlett Fedorak, a Burnaby resident who was diagnosed with Krabbe disease – an inherited disorder that destroys the protective coating of nerve cells in the brain and throughout the nervous system. The condition is characterized by rigid muscle tone in the lower extremities.
Scarlett had an older sister who was born with Krabbe and who passed away before her second birthday.
Krabbe requires immediate treatment for survival. For Scarlett, that meant beginning chemo at 20 months. As a teen, she faces a number of developmental and physical delays as a result of the disease. When she was younger, she was able to ride a bicycle, but as the disease has progressed, she’s been unable to do so.
Her physiotherapist suggested an adaptive tricycle to keep her active – and that’s where Variety came in. After trying a number of options, the family found Variety, and, just this past May, the charity was able to get her the adaptive ride she needed.
“Variety BC is often the last resort for families who have exhausted all other funding opportunities,” said Kenton Boston, Variety board chair and vice-president (national and network news) of Global News, in a press release. “Without the generous support of our listeners and viewers, we simply cannot keep up with the demand. The time is now for all of us to come together and to give what we can to ensure that our most vulnerable kids are not forgotten.”
For this year’s Variety Week, Strand Development and Townline Homes are coming on board to match every Variety Week donation up to $500,000.
Last year’s Variety Week raised $682,239. Donations can be made by calling toll-free, 310-KIDS, or online at variety.bc.ca. You can also text KIDS to 45678 to make an automatic $20 contribution.