LIFE with cystic fibrosis (CF) is all Sam Phillips has ever known.
The Atwell junior was diagnosed with the genetic disease, which primarily affects the lungs and digestive system, while still in hospital after birth.
Now six years old, the condition is managed with a high fat, high salt diet, enzymes before every meal, vitamin supplements, salt tablets, half an hour of physio twice a day and regular medical checkups.
While it does affect a lot of his day-to-day life, mum Sonya said it did not define him.
“At the moment Sam is participating in swimming, Aussie Rules football, basketball, practising front flips on our trampoline and has recently discovered the joys of running down the hallway in socks, with a slide at the end of course,” she said
“While doing everything we can to keep Sam well, over the past six years we have tried very hard not to let CF stop him, or the family as a whole, from doing anything.
“CF is something that he has, it doesn’t define him.
“He is not a CF boy, but rather a boy who happens to have CF.”
Cystic fibrosis affects nearly 4000 children and young adults living in Australia.
While there is no cure, with treatment aiming to slow progression of the condition, researchers continue to target a solution.
On Friday, volunteers will aim to sell 13,500 long-stemmed roses as part of the 65 Roses campaign run by Cystic Fibrosis WA.
Proceeds will go to providing care for children and young adults with CF, as well as research into the condition.
Despite there being no cure, Mrs Phillips said initiatives such as the 65 Roses campaign, strong family support and a positive outlook offered plenty of hope.
There are new drugs being developed that treat the actual problems that cause CF, which offers immense hope,” she said.
“This will significantly reduce further lung damage and disease and therefore reduce the number of hospitalisations, the need for intensive drug treatment, time off work, off school and significantly improve their quality of life.
“We are very hopeful and excited about the future.”