Two Beach families are choosing to make something positive out of what many might consider a bad situation.
Mary and Aaron Mittler’s second daughter Lucy was born in March 2013.
“Two weeks later we got a phone call that no parent would ever want to get,” said Aaron.
Lucy had been diagnosed with cystic fibrosis after a routine screening.
CF is a fatal genetic disease with no cure. An estimated one of every 3,600 Canadian children has cystic fibrosis, which affects mainly the digestive system and lungs. At two and a half years old, Lucy is already receiving an hour of physiotherapy a day, and takes enzymes with every meal.
“For the first few years of her life I think Molly thought all babies got physio,” said Mary of their five year-old daughter.
Despite that, recent research has greatly improved the outlook for those with cystic fibrosis in Canada, something doctors at SickKids Hospital explained to a very worried Aaron and Mary at their first appointment with specialists.
“When we got the call we were naturally devastated, because all of our science was 20 years old,” said Mary.
Speaking with the experts reassured them that Lucy’s prognosis was much better than it was for those with the disease even a decade ago. Doctors told Mary and Aaron that Canada has the best life expectancy in the world for people with CF.
“She has a really positive outlook and the expectation is for a long, healthy life,” said Aaron.
Despite the relatively good prognosis for Lucy, neighbour Claire O’Shea didn’t take the news lightly.
“People take news like that in different ways,” said Aaron.
The O’Shea and Mittler families both describe each other as more family than friends. They met five years ago when their neighbouring homes were under construction, and they asked the contractor to not build a fence between the yards. Claire’s two boys, each a few months older than Lucy and her older sister Molly, have grown up sharing a back yard.
When Claire heard about Lucy’s diagnosis, she sprang into action, organizing a fundraiser for the primary funder of CF research.
“I just felt like I’d been punched in the stomach,” she said. “I wanted to do something more, rather than just say ‘we’ll be there for you.’”
Thus was born Lucky Lucy’s Casino Night, a charity casino event at the Toronto Hunt on Kingston Road. The first event in 2013 raised $28,000 for Cystic Fibrosis Canada. Last year’s total hit $41,000, and Claire and her committee of about 20 organizers hope to top a three-year total of $100,000 at the third annual casino night on Thursday, Sept. 10.
Mary and Aaron were floored by the response from both of their employers, and in Aaron’s case, from his Balmy Beach Rugby Club teammates, as well as their friends and neighbours.
“For us, it’s been just astonishing how we’ve been supported,” said Aaron.
“It really speaks to the community. We’re really lucky to have that sort of support,” said Mary.
Anthony Keating, chief development officer at Cystic Fibrosis Canada, said this sort of independently organized fundraiser is becoming more common for organizations like his
“They are incredibly successful,” he said. “It really helps the charity keep the cost of fundraising down … It’s incredibly important to organizations like us.”
While Canada isn’t as big as other countries, strong support has helped researchers here make some of the most significant contributions to CF science in the past couple decades.
“We’re really well-respected and seen as a top player in CF research worldwide,” said Keating.