CHARLIE Ciavarella is just 18 months old but he has spent two months of that in hospital, with more to come.
Charlie is undergoing treatment for an immunodeficiency disorder that has only been recorded about 10 times worldwide.
His parents Tony and Merryn, who both used to live and work in the south-west, had their world turned upside-down last August when Charlie first fell ill aged eight months old.
“He had a stay in hospital at the time and they originally thought it was an illness called Kawasaki disease, which would have potentially been a one-off thing. Then in February the symptoms reared their head again.”
The family, which lives at Oxley near Wangaratta, has relocated to Melbourne to be with Charlie for his current stay at the Royal Children’s Hospital, which could last until the end of the year.
As part of his condition – which is known as a STAT1 loss of function mutation - Charlie’s immune system does not regulate itself properly and overreacts when triggered by illness. His immune system attacks blood cells, inflames and enlarges his organs, leaving him at times unable to sit upright, stand or walk, and suffering from fevers and rashes.
On July 30 he will undergo treatment similar to that of a cancer patient, including chemotherapy followed by a bone marrow transplant.
Mr Ciavarella, who worked at the Pastoral and Veterinary Institute in Hamilton, said he and his wife were trying to stay positive.
“You just focus on being there for him and doing everything to make his journey as good as possible,” he said.
“There are risky times ahead but it’s just about looking at the light at the end of the tunnel and keeping your chin up.”
Doctors began suppressing Charlie’s immune system earlier this month ahead of the bone marrow transfusion and he will remain in isolation for about two months until his new immune system develops. It’s likely he will need to stay in Melbourne until at least the end of the year.
Mrs Ciavarella, who attended Warrnambool College, said Charlie’s age made it hard for him to understand what was happening.
“When he goes to have a bath he cries and screams because he can see the line coming out of him,” she said.
Friends and family have been pitching in to help run their business, Ciavarella Oxley Estate winery, and set up a website, Facebook page and bank account to help relieve some of the pressures.
“It’s a bit overwhelming,” Mrs Ciavarella said of the support they had received.
Visit oxley.vic.au/help-charlie-fundraiser to make a donation.