November 20 marks the 30th anniversary of National Child Day in Canada. In honour of this event, DQ Canada is urging Canadians to support the Children’s Miracle Network, a charity that helps children in hospitals across Canada reach their full potential: kids like Rowan from Newfoundland and Labrador, who was diagnosed with Wolf-Hirschhorn syndrome at just 11 days old.
A genetic condition that’s the result of a chromosomal abnormality, Wolf-Hirschhorn syndrome causes delayed growth and development and affects many parts of the body. With an estimated prevalence of one in 50,000 births, WHS is a condition so rare that Rowan is the only child affected by it in all of Newfoundland and Labrador.
“Rowan was flagged in utero at about 20 weeks,” recalls his mom, Brittany. “He had severe growth restriction. I can’t remember how much he weighed at the time, but he was in less than one percentile on the growth tracks. We didn't know at that time whether it was a genetic issue or if it was just a placental issue. Once he was born, there were other markers that clued us into thinking maybe there's something more going on here.”
Affecting everything he does from the way he eats to his ability to speak, Rowan’s diagnosis is complicated. Helping him to thrive underscores how much raising little ones, whether on National Child Day or any day, is a job for all of us.
“We do know of a few other families with Wolf-Hirschhorn syndrome in Canada, but they tend to be in larger, more populated areas like Quebec and Ontario,” says Brittany. “Because he’s the only person here, we do a lot of research and keep up to date, not only for us but for his therapy team. It’s all new to them too. It’s a learning experience for all of us.”
As they say, it takes a village. From his earliest days, Rowan has been receiving care from a multidisciplinary team at the Janeway Health and Rehabilitation Centre in St. John’s, working with experts in genetics, cardiology, audiology, neurology and other clinical areas. Rowan's support also comes from far beyond the centre: DQ's longstanding support benefits kids, like Rowan, who make over 3.2 million visits a year to Canada's children's hospitals. Since 1984, the independently owned and operated DQ Canada restaurants have raised more than $50 million for local children’s hospitals. Money raised by these restaurants stays in their local communities, to help children and their families while they receive life-changing care.
Now three years old, Rowan is hitting new milestones every day thanks to the care and contributions of so many.
“He’s a complete little snazzpants,” says Anneliese Ellis, a speech-language pathologist who has been part of Rowan’s team at the Janeway since he was just four weeks old. “Speech-language pathologists work in a variety of areas — feeding and swallowing, our comprehension of what’s going on around us, comprehension of words for familiar routines, people or common objects in our environment and how we use language to make connections with others. There are so many different things we work on, and Rowan has made gains across all of them.”
With the care of Anneliese and others, Rowan can participate in the kind of everyday things many families take for granted — even ice cream parties. “He has a feeding tube so he can’t actually ingest anything orally,” says mom Brittany. “But he’s allowed to have tastes, so we’ll put ice cream on his lips and he licks it off, and feed it to him through his G-tube. His big sis likes to make sure he’s never left without a treat.”
In addition to purchasing a Blizzard on Miracle Treat Day, there are many easy ways to support local children's hospital foundations through the Children's Miracle Network. These include making a donation online on DQ Canada’s website, rounding up purchases to the nearest dollar at participating locations, and visiting your local DQ to support them when a franchisee puts on their own fundraising events. Every family can turn treat time into the opportunity to support kids like Rowan.
“The most amazing thing about children is the sky’s the limit,” says Anneliese. “It’s our job to cheerlead, to encourage and foster their development and just support them as best we can.”
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