5-year-old raises $11K for muscular dystrophy research
CBC News | Posted: September 6, 2014 11:14 PM | Last Updated: September 6, 2014
Emily Wirth, 5, surpassed her fundraising goal in Saturday's Muscular Dystrophy Walk
A five-year-old girl was among the 300 Edmontonians raising awareness – and money – in support of those living with muscular dystrophy at a special walk on Saturday.
Emily Wirth was born with congenital muscular dystrophy, a degenerative neuromuscular disorder that can affect people of any age. Common signs of the disorder are progressive muscle-wasting, weakness, and loss of function.
"With Emily, it's more just the weakness in the muscle,” said her father Merv Wirth. “She still has the ability to move around, as you can see she can walk. It took a long time for that to come around. By eighteen months she was barely sitting up."
But Emily’s condition has not slowed her or her family’s ambition to raise awareness and find a cure for the condition.
This year, Emily set herself a $10,000 fundraising goal – a number they surpassed by $1,000 by the close of Saturday’s Walk for Muscular Dystrophy, which was expected to raise $90,000 in total.
“The biggest thing we hope the money goes toward is research,” said Wirth. “The more money we can put toward research, the better chance there is of finding a cure or a treatment.”
And Emily’s family hopes that spreading word about the disorder through events like Saturday’s walk will help also raise awareness, making it easier for those diagnosed with the condition.
"The more people we can get understanding what muscular dystrophy is and how it affects people and the differences and the different disorders – the easier it's going to be on the younger people coming up in the next generation who may be afflicted by the disease."
The Wirths' goal is also one shared by the walk’s organizers.
“We had a great participation from people who are affected by neuromuscular disorders here today, and it’s just a great way to ... rally their friends and their family around supporting their community and their life,” said Rachel Chan with Muscular Dystrophy Canada.
“It’s just a great way to kind of raise awareness about what it actually means to live with a neuromuscular disorder and what that looks like in a day-to-day setting.”
As for Emily and her family, they are taking her condition one day at a time as they watch out for signs of regression.
“Going forward is the unknown. We don’t know what will happen and with all the specialists that we’ve talked to – they’ve given us the same answer,” said Wirth.
“She's taught us more than we've taught her. She shows us what she can do and we follow her lead.”