Aspiring actor raising awareness of cystic fibrosis

May is cystic fibrosis awareness month, and 10-year-old Bacchus Marsh resident Ben and his mother Virginie Jost are aiming to bring attention to the condition.

Cystic fibrosis affects the lungs and digestive system due to a malfunction in the exocrine system. There is currently no cure.

“The issue with cystic fibrosis is it’s a genetic disorder with limited life expectancy and it is a very invisible condition so it’s not as much in your face,” Ms Jost said.

“It’s mainly on the inside; it’s things you can’t see.

“All the treatments that they do stay behind closed doors, which makes it very frustrating to make people realise what a serious condition we’re dealing with.”

Ben is an aspiring actor who loves LEGO and Star Wars. He was diagnosed with cystic fibrosis as a baby, with no family history of the condition.

“A lot of people with CF, it starts during pregnancy with things not going well, but with Ben we actually thought for six weeks we had a completely healthy baby,” Ms Jost said.

“It came as a shock when I got the results from the heel prick test.

“I was born in Germany – I am half-German and half-French – so to be called into the Royal Children’s Hospital for a week and be bombarded with medical training to become a nurse, physio and dietitian is very challenging when it’s not your mother tongue.”

Ben has access to modulators and has not had a hospital admission for years, but he still gets many infections and recently finished six weeks of double treatments. He is set to be readmitted to hospital in coming weeks.

“Ben takes about 15 to 20 tablets a day, he has the nebuliser three times a day and does extra physio,” Ms Jost said.

“Treatments take between one and two hours depending on his compliance and these are all factors that affect our lives.

“It has a massive impact not only on our lives but also on Ben’s… he can’t just sleep in or have sleepovers at friends’ houses because we have to think about how we’re going to fit in the treatments.”

Ms Jost and Ben are sharing their story to support CF Together, an organisation that aims to advance treatment and improve the lives of people with cystic fibrosis.

“They’ve been crucial in providing financial support and emotional support but also hope,” Ms Jost said.

To make a donation or find out more visit cftogether.org.au .