By KATH GANNAWAY
CYSTIC fibrosis is the most common life-threatening genetic condition for children in Australia.
“It is more common than people think, and it’s a serious condition,” Kirsty Bowness told the more than 70 people who came together for the Yarn The Night Away fund-raiser in Healesville on Thursday 30 June.
Kirsty’s talk was a heart-rending and sobering moment in a night that was filled with colour, laughter, chatter, great food and wine and generosity.
The event, hosted by Crumbz Craft and held at Alchemy, raised $1001.80 for the Royal Children’s Hospital’s Cystic Fibrosis Research.
The Bowness family, Kirsty and husband Stephen and children Grace, 9, and Liam, 5, live with the condition every day, and it has shaped their ‘big picture’ approach to life.
Grace and Liam both have cystic fibrosis.
Keeping life as normal as possible in the midst of the challenges of keeping the children as well as possible with current medical treatments, is accompanied by a determination to fund vital and under-funded research.
“In the time since Grace and Liam were born, we’ve seen changes in their treatment that have been beneficial and those have come out of research,” Kirsty said.
“It’s a progressive condition, so it’s about keeping them as well as possible and research and treatment make all the difference.
“It’s also how we manage as a family,” she said.
“We can’t just sit back and say this is terrible, we have to do something.”
Three years ago, Kirsty started the Big Roast, and two big community roasts in Toolangi later this month are part of the 2016 program.
In one of those funny/sad moments that you get with kids, the idea for the Big Roast came in the early days of Grace’s diagnosis when she referred to cystic fibrosis as ’65 Roasters’.
Touched by that first innocent acknowledgement of her illness, Kirsty and Stephen hoped to give Grace her ’65 Roasters’ by inspiring at least 65 people to hold a Big Roast awareness and fund-raiser.
The idea took off and has led to other events, including Yarn The Night Away.
Again, the Crumbz connection came through Grace who started knitting classes with owner Kay Trembath about a year ago.
When Kirsty approached Kay for support for the Big Roast, she said neither of them knew how they could make the link.
Kay embraces the cause and created her own fund-raiser with the help of Alchemy cafe and other local businesses who pitched in with a pool of raffle prizes.
Kirsty said the generosity of people continued to astound Stephen and herself.
“You are always going to get the support of family and friends, but we continue to be blown away by people who don’t even know Liam and Grace,” she said.
“People have been so generous donating money, time and energy, and we find it extraordinary.”
To support research through the Royal Children’s Hospital’s Cystic Fibrosis Research Trust, Kirsty is encouraging people to take a break from the kitchen, rug up and book into Toolangi’s Big Roast events at The Singing Gardens on Saturday 23 July and at Toolangi Tavern on Wednesday 27 July.
Individual families, clubs and businesses can also hold a Big Roast with more information available at rchfoundation.com.au/event/thebigroast2016.
For details and bookings for the Singing Gardens event, call 5962 9282 or Sharon Keogh on 0456 655 008 and for Toolangi Tavern, call Anna on 5962 9398, or email toolangitavern@hotmail.com .
