Kimon’s rare kidney disease journey

Kimon was just three years old when his health started to decline. He experienced swelling on and off for around a year and then he started having issues with his kidneys.

Kimon was transferred to The Royal Children’s Hospital (RCH) where doctors diagnosed him with kidney disease and put him on steroids to treat his symptoms. With the right treatment, the disease could subside by the time Kimon became a teenager, his parents were told.

But after a month of treatment, it was clear the medication wasn’t working.

Suspecting a genetic condition could be causing the symptoms, doctors biopsied Kimon’s kidney and found that he has a type of kidney disease called Focal Segmental Glomerulosclerosis (FSGS) that is resistant to the usual steroid treatment. Doctors immediately started a different treatment approach.

Kimon’s Mum Georgia said that getting a diagnosis was relief, but finding out Kimon had a much more complicated condition than they first thought was a shock.

“Hearing your child has a chronic disease is quite hard,” she said. “How can you explain to your son that ‘you need to come to hospital every second day for treatment’?

Georgia said Kimon’s treatment was the hardest part because it required him to receive intravenous (IV) therapy to treat fluid loss, and Kimon had a severe phobia of needles.

“He was very young so I couldn’t explain it all properly to him, which was very difficult,” she said.

Kimon remained stable for four years thanks to various medications prescribed by his doctors at RCH, but his kidneys eventually began to fail. He would need a kidney transplant.

“We were prepared for Kimon to have a kidney transplant at some point, but we’d been waiting on a new treatment for FSGS that doctors said would be available soon and were hoping he’d be one of the lucky ones, who wouldn’t need a transplant,” Georgia said.

Unfortunately, the medication wasn’t available in time for Kimon, so his parents started testing to see if they were compatible donors.

Kimon’s father George was determined to donate his kidney to Kimon, but his test results showed that it would have been too risky for him to donate his kidney.

“I tested to see if I was compatible and I became part of Australian and New Zealand Paired Kidney Exchange Program, which is a system that allows you to receive a kidney if you donate one,” Georgia said.

Georgia said she had a lot of mixed emotions about the transplant but the hardest part was seeing Kimon on dialysis (a procedure to remove waste products and excess fluid from the blood when the kidneys stop working properly).

Kimon had both kidneys removed and he was put on dialysis to prepare for the transplant. During one dialysis session Kimon needed to stay in overnight.

“Every time Kimon lay down he started crying and got up because he felt like he was choking,” Georgia said. “Luckily Kimon’s specialist Dr Cathy Quinlan came by to see how he was doing at just the right time and rushed him to the Intensive Care Unit (ICU).”

Kimon’s lungs were filled with extra fluid so he was put in an induced coma to have it removed.

“If Dr Quinlan hadn’t come at that exact moment, we could have lost Kimon,” Georgia said.

Fortunately, Kimon recovered and didn’t have any further issues so both his and his mum’s transplants went ahead in 2018.

“Once Kimon had his new kidney he felt amazing because his body was finally working properly. The care he received at the hospital was exceptional and he made a full recovery,” she said.  

Georgia said it had been a long journey but Kimon was now a completely healthy Grade 6 student. “He’s a huge fan of the Charlotte Hornets NBA team, and he loves playing basketball. We’ve been able to travel overseas as a family, and recently visited Greece.”  

Kimon is immunosuppressed so he’ll be on medication for the rest of his life, and he needs to hospital every six weeks for check-ups. But apart from that, he’s just like all his peers.

“Kimon has become very resilient, he’s not even scared of needles anymore. It’s amazing to see what children are capable of and to see how resilient they can become,” Georgia said.

Read about the cutting-edge stem cell research Murdoch Children’s Research Institute researchers are conducting to help children like Kimon.