A young Australian boy who survived major surgery at just six months of age is in the middle of a brutal new battle for his life, his mum has revealed.
Nicholas Reed was just a baby when he was diagnosed with biliary atresia, a childhood condition that blocks the liver’s bile ducts.
He spent months in intensive care before undergoing a vital liver transplant that provided hope for the future.
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“The hardest part for any parent is when you think your child is healthy and you’re told he’s not. It was very profound,” Sydney mum Elena Reed told 7NEWS.com.au.
“The road to the liver transplant was devastating. We lived in the hospital and he was perishing quickly. It felt like my world was splitting into a million pieces.
“To find out he was going to have the transplant, I was ecstatic.”
Since then, little “Nico”, now aged six, has undergone several more surgeries, had hundreds of blood tests and been admitted to hospital more than 100 times.
Loved ones say he has battled “harder in his short life than most of us will ever need to”.
But his difficult journey took another harsh turn last month when has was diagnosed with a rare and aggressive post-transplant cancer.
People like Nicholas are at a higher risk of cancer, in part because of medications used to suppress the immune system and prevent rejection of the organ, according to experts.
The news was a dreadful blow as Nicholas prepares to celebrate his seventh birthday on Monday, an occasion now likely to be spent in hospital.
Nicholas had returned home from school with a fever and complained he was tired and had a sore stomach before doctors confirmed the worst.
Despite never missing any scheduled medical appointments, Elena initially blamed herself.
“I was always so worried about him. I would always do more — more checks, more appointments,” she said.
But there was nothing the mum of three could have done to notice the aggressive disease earlier, doctors assured her.
The family’s road ahead is paved with uncertainty, with treatment likely to take up to two years.
Elena knows her little boy will handle it as he does with everything.
“He’s an old soul,” she said.
“If you speak with him you would think he’s 120 years old. He’s very empathetic, deep, very thoughtful.
“He’s very caring and has so much love and compassion.”
Chemotherapy has begun to halt the disease which has already spread through the boy’s stomach, lungs, kidney and shoulder.
“He’s in a lot of pain. As a mum, I’m watching him and I can do nothing,” Elena said.
Elena admits times are tough financially after years where she has had to focus on her middle child and has not been able to work as much as she would like.
The family is currently in talks with the NDIS to review Nicholas’ plan, hopeful they can secure more funding for support workers that can care for his siblings while his mum joins him in hospital.
A crowdfunding effort has also been launched for Elena, who previously helped raise almost $200,000 for a FibroScan machine that can assess the health of a person’s liver at The Children’s Hospital at Westmead.
“This is what she does — finds the things that need fixing and does what she can to raise awareness and funds to help other liver families and our health services,” GoFundMe organiser Kerren Hosking said.
“This latest diagnosis has rocked Elena to her core and she desperately needs our help, even though she won’t ask.”
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