A family who know how devastating a cystic fibrosis diagnosis can be recently tackled an assault course in support of poorly children with the life-limiting genetic disease.
Melissa and Andrew Storr, from Hull, discovered their daughter Charley-Sue, age two, had cystic fibrosis from the NHS heel prick test when she was just two weeks old.
Parents who both carry a gene of the recessive condition have a 25% chance of having a baby with cystic fibrosis in each pregnancy. The disease causes excessive mucus build-up and scarring of the lungs, which can result in reduced lung function over time.
Cystic fibrosis currently has no cure and can shorten the lives of those who have it, according to the NHS. But new treatments mean many people diagnosed with the condition today will live well past middle-age.
Melissa told Hull Live Charley has responded well to a “wonder drug” now available on the NHS, but other families they know are not so lucky, which inspired them to take on the Total Warrior obstacle course in Bramham Park, near Leeds to raise money for the Cystic Fibrosis Trust.
Recalling Charley’s symptoms, Melissa said: “She was just eating constantly, obviously everything she ate came out. It wasn’t a common cold or anything, it was a really bad cough. She was just constantly ill.
(Image: Supplied)
“She has been put on Kaftrio, which is a wonder drug for people with cystic fibrosis. She has been absolutely amazing since she has been on that.”
Melissa said Charley’s diagnosis was “a big eye-opener for me”. She said children with the condition can’t mix because of the risk of passing on serious lung infections, but through the cystic fibrosis community they had met “people who really suffer with it”.
She said: “It is just hearing other stories and how their children are affected. It just got to me because we are very lucky with Charley, but other people aren’t.”
Melissa said they had been training for the 12km assault course nearly every single day, with rest days. She said: “Obviously, it has been hard and you have got to do everything: endurance training, strength training, a little bit of everything.
“It is fun: I am not a fan of running, but we have got there.”
The Storr family have made a gofundme page with the goal of raising £1,000 for the Cystic Fibrosis Trust. They successfully completed the Total Warrior Challenge on Sunday, June 22.