Walk to prolong lives of CF kids
A DIAGNOSIS of cystic fibrosis used to carry a life expectancy of just 10 years.
Today, children like Warwick teenager Peter von Stieglitz can look forward to much longer lives.
The 13-year-old and his mother, Clare McHugh von Stieglitz, are starting the Great Strides Walkathon in Warwick to help keep research into the genetic illness going.
The national event is a fundraiser for the Cystic Fibrosis Foundation, which offers support to affected children and their families.
Mrs McHugh von Stieglitz said she and Peter wanted to give back to the organisation that had helped them through hospital stays.
"We do what we can for them," she said.
"We haven't needed a lot of assistance, but when we do, they are there.
"As a baby, association workers would come and perform physio on Peter several times a week."
The dedicated mum said the association received little funding and relied heavily on people's generosity.
"They get 46 cents per person in government funding - that's it. The rest is fundraising and they support about 1000 kids in Queensland," she said."
"The association also supports research, which is increasing the life expectancy of these kids born with the most common genetic illness."
Cystic fibrosis is a life-threatening genetic condition and affects one in every 2500 children in Australia.
It is a degenerative condition that can affect the lungs, digestive system, liver, reproductive system, bones and sweat glands.
Babies with the condition today may have a life expectancy beyond 50.
Peter's dad Lewis said children with the condition are essentially isolated during hospital visits and the average two-week stay can be extremely hard for youngsters.
"Being in hospital is incredibly boring because the kids can't associate with other kids with cystic fibrosis because they can catch each other's bugs," he said.
The association provides much-needed "boredom buster" packs for these kids.
Mr von Stieglitz said the road ahead for people with cystic fibrosis was not an easy one.
"It's a long-haul thing and isn't going to be solved in the near-future but research is moving slowly," he said.
The Great Strides Walkathon will be held in Warwick next month.
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The Great Strides Walkathon will be held on October 21 at the Riverwalk.
To register, visit greatstrides.com.au.greatstrides.com.au