Ellie-May Jury makes growing up with a life-limiting condition look effortless, but hours of the bubbly school girl’s daily routine is spent managing cystic fibrosis (CF), a genetic disorder affecting the lungs and the digestive system.
Each day the 11-year-old takes a multitude of tablets, including an enzyme supplement and antibiotics, engages in a minimum of half an hour to an hour of intensive physiotherapy, eats a highcalorie diet, and makes a conscious effort to steer clear from germs and bacteria.
One in 25 people carry the CF gene, with one copy from each parent during conception causing a child to inherit the condition. In Australia, one in 2,500 babies are born with CF, equating to one every four days.
Jenny, Ellie’s optimistic and devoted mother, said she didn’t have an in-depth understanding about CF when she was told Ellie had the condition six weeks after her birth.
“I had heard of the word, but I don’t know… I think at the time I was thinking of spina bifida and all those words that come to mind and I thought ‘ok, let’s go and have a look at what this really is’”, the Jan Juc mother of two said.
“It was pretty full on at the start and then down to the Royal Children’s Hospital pretty quick in the first week after diagnosis for a three-day crash course in getting Greg (Jenny’s husband) and me to understand what we were dealing with and what needed to be done to keep this one (Ellie) as healthy as possible.”
The biggest challenge for people with CF is avoiding infection, which can cause lung failure, the leading cause of death for CF sufferers.
To keep her lungs working as well as possible, Ellie frequently visits the hospital for a “tune-up”, where doctors thoroughly check the health of her lungs.
Although Ellie spends a lot of time visiting hospitals where other CF sufferers are also receiving treatment, people with CF are advised not to socialise with each other to prevent cross-infection.
The rule is six feet apart, a notion recently explored in Hollywood film, Five Feet Apart (a romantic comedy where two CF sufferers flirt with the idea of transgressing the six-feet-apart rule as their attraction to each other grows).
“I’m not really allowed to (interact with people with CF), but I would love to,” Ellie said.
“I’ve heard of people and I’ve heard of their stories and I think as I get older I’ll probably go into a support system where like, maybe I’ll meet someone in hospital one day or maybe I’ll go online and chat with someone.”
Ellie said the most difficult hurdle has been, and continues to be, a fear of missing out.
“I seem to miss out on a lot, and I feel like whenever I miss out on something, like I’ve missed out on so many of my best friend’s birthday parties because they’ve had it at a pool that is unhygienic or I’ve been in hospital, I do feel like I miss out on a lot of things from school and hang-outs with friends and family,” she said.
“It’s sad because I feel like I can’t be the average kid that goes unless they’re on a holiday, but with me, I’m on a non-fun holiday so I can’t come and that’s been the biggest challenge.”
Since 2012, Jenny has been an active member of Cystic Fibrosis Geelong Inc., a support group established by parents of CF sufferers in the Geelong region.
The volunteer-run initiative aims to raise awareness about CF as an inherited condition and will host its fourth annual Cure for Cystic Fibrosis Gala Dinner on Saturday May 25 at The Pier, Geelong.
The evening will include fine food, entertainment, live and silent auctions, special guests and motivational speakers.
All funds raised will go to Cure4CF to continue to promote scientific research for the condition in the hope of discovering a cure.
“It’s a great night, not just for fundraising but for awareness and a real buzz,” Jenny said.
The Cure for Cystic Fibrosis Gala Dinner will be hosted at The Pier (Cunningham Pier, 10 Western Foreshore Road, Geelong) on Saturday May 25.
Tickets are $165 per person and available via trybooking.com. Tickets include canapes, a two-course meal and drinks for the evening.