THE Border community is being urged to dig deep to help a young boy battling a rare and potentially fatal illness.
18-month-old Charlie Ciavarella is undergoing treatment for an immunodeficiency disorder that has only been recorded about 10 times worldwide, and he has already spent more than two months in hospital.
His parents Tony and Merryn had their world turned upside down last August when Charlie first fell ill, but they’re hopeful major surgery at the end of the month will be successful.
“Our concerns started last year when he was eight months old,” Tony explained.
“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.”
Charlie had spent 10 days at the Royal Children’s Hospital in Melbourne last August after being transferred from Wangaratta hospital.
The hospital stay in February saw Charlie taken into intensive care, and the Oxley family spent seven weeks in Melbourne for treatment.
As part of his condition, 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 liver, spleen and other organs, including the brain.
Charlie has at times been left unable to sit upright, stand or walk, and he has had fever and rashes.
A coming operation on July 30 will involve treatment similar to that of a cancer patient, including chemotherapy followed by a bone marrow transplant.
As Charlie prepares for an open-ended stay in the Melbourne — which could stretch into next year — his father says they are trying to stay positive during an incredibly testing time.
“I guess you just focus on being there for him and doing everything to make his journey as good as possible,” he said.
“It throws your life into disarray; all the normality of life gets turned upside down.
“But you try to keep a positive view.
“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 on Friday ahead of the operation, and a suitable bone marrow donor has been found.
He will remain in isolation for about two months after the operation until his new immune system develops, but it is likely he will need to stay in Melbourne until at least the end of the year.
Charlie’s immune condition is what’s known as a STAT1 loss of function mutation, and Mr Ciavarella said one of the hardest things was not knowing what was next.
“I guess that’s the difficult thing for us; it’s a bit open-ended,” he said.
“We’re not quite sure what’s going to happen once he’s out of hospital and if we will need to remain in isolated accommodation.
“That’s still a bit up in the air.”
On top of worrying about their son, the couple are also trying to run a business.
They have been asking friends and family members to help out at the Ciavarella Oxley Estate.
A website, Facebook page and bank account have been set up by friends to help relieve some of those pressures, which Mr Ciavarella said was already running into the thousands of dollars.
How to donate
- BANK: WAWCU
- BSB: 803 070
- ACCOUNT: 89455
Family friend Sally Rodgers said the couple were in need of support.
“They have enough to worry about,” she said.
“We want to take the financial pressure off them.
“They are a generous and loving family who have contributed to the community and the least we can do is repay them and let them know they have the community’s support.”
She is asking people to dig deep to help the young family as they face stress and uncertainty in coming months.
The cost of food, accommodation, time off work and 500 kilometre round trips to hospital are significant, but Mr Ciavarella said it was touching to see the support.
“I guess we’re just buoyed by the offers and messages of support we’ve had from people, and just knowing that the community cares,” he said.
“It has had a big impact.
“It’s very hard when you work for yourself and it’s a family business, but we’re also lucky that we’ve got family and friends who can assist us with that.”
While donations will help to relieve some of their financial pressures, the couple believe the best gift will be a healthy and happy young boy.
“In some way he probably handles it better than his parents,” Mr Ciavarella said.
For more information, search online for the Help Charlie Fundraiser or make a donation to the WAW bank account listed above.