A baby Australian boy who survived major surgery at just six months old is in the midst of a brutal new fight for his life, his mother has revealed.
Nicholas Reed was just a baby when he was diagnosed with biliary atresia, a childhood condition that blocks the bile ducts of the liver.
He spent months in intensive care before undergoing a vital liver transplant that gave him hope for the future.
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“The worst thing for any parent is when you think your child is healthy and they tell you it’s not. It was very profound,” Sydney mum Elena Reed told 7NEWS.com.au.
“The road to liver transplantation was devastating. We lived in the hospital and he died quickly. It felt like my world was falling into a million pieces.
“When I found out he was going to have the transplant, I was thrilled.”
Since then, little “Nico”, now six years old, has undergone several more surgeries, had hundreds of blood tests and been hospitalized more than 100 times.
Relatives say he “fought harder in his short life than most of us will ever need.”
But his difficult journey took another hard turn last month when he was diagnosed with a rare and aggressive post-transplant cancer.
People like Nicholas are at higher risk of cancer, experts say, in part because of drugs designed to suppress the immune system and prevent organ rejection.
The news came as a huge blow as Nicholas is preparing to celebrate his seventh birthday on Monday, an occasion which he is now likely to spend in hospital.
Nicholas had come home from school with a fever and complained of tiredness and stomach pains before doctors confirmed the worst.
Although Elena never missed a scheduled doctor’s appointment, she initially blamed herself.
“I’ve always worried about him. I would always do more — more checks, more appointments,” she said.
But the mother of three could not have done anything to notice the aggressive disease earlier, doctors assured her.
The family’s future is full of uncertainty and treatment is likely to take up to two years.
Elena knows that her little boy will handle anything like he does anything.
“He’s an old soul,” she said.
“If you talk to him, you would think he was 120 years old. He is very sensitive, profound, very thoughtful.
“He is very caring and has so much love and compassion.”
Chemotherapy has begun to stop the disease, which has already spread to the boy’s stomach, lungs, kidney and shoulder.
“He’s in a lot of pain. As a mother, I’m watching him and I can’t do anything,” Elena said.
Elena admits times are tough financially after years of having to focus on her middle child and not being able to work as much as she would like.
The family are currently in talks with the NDIS to look into Nicholas’s plan in hopes they can get more funding for auxiliaries to look after his siblings while his mother visits him in hospital.
A crowdfunding efforts was also launched for Elena, who previously helped raise nearly $200,000 for a FibroScan device, which can assess the health of a person’s liver at Children’s Hospital in Westmead.
“That’s what she does — she finds the things that need fixing and does what she can to raise awareness and raise funds to help other Liver families and our health services,” said GoFundMe organizer Kerren Hosking.
“Elena was devastated by this latest diagnosis and she desperately needs our help, even though she is not asking for it.”