A Sydney mother has shared the heartbreaking story of her little boy’s rare cancer diagnosis, following the life-saving liver transplant he had when he was just a baby.
Elena Reed’s son Nicholas was a newborn diagnosed with biliary atresia, a childhood liver disease that blocks the bile ducts.
Baby Nicholas spent months in ICU before finally undergoing liver transplant surgery to save his life at just five months old.
Nicholas has since faced a difficult journey, having suffered numerous complications, resulting in over 100 hospitalisations and multiple surgeries.
Nicholas, 6, has been diagnosed with a rare and aggressive cancer
Then in June this year the now six-year-old was diagnosed with an aggressive and ‘late stage’ post-transplant cancer.
Ms Reed, a single mother-of-three boys, said Nicholas had complained of a ‘sore tummy’ the week before the family recieved the shocking news.
‘I was blaming myself thinking that I had missed it, but I hadn’t missed any scheduled appointments,’ she told Yahoo! News.
The 45-year-old said the past week had been especially difficult as her son’s hair had begun to fall out as a result of chemotherapy.
‘He’s such a deep soul,’ Ms Reed said.
‘He was so looking forward to school holidays.’
Nicholas was a newborn when he was diagnosed with a with biliary atresia, a childhood disease of the liver that blocks the bile ducts (pictured with mother Elena Reed)
Ms Reed said the devastating news had been ‘totally out of the blue’.
‘Lately he has been doing really well. We hadn’t been to the hospital for almost a year,’ she said.
‘It’s everywhere now – it’s spread in his stomach, in his intestines, all the way up to his shoulders and lungs as well – it’s the worst type of lymphoma.’
Nicholas is expected to undergo at least two years of treatment, including radiation.
‘There’s hope but there’s also complications ,’ Ms Reed said.
‘I cry everyday’.
Ms Reed is a single mother of three boys and said she is ‘just surviving’
The single mum, who said she has no family support, said she is ‘just surviving’.
Ms Reed said she had exhausted her NDIS budget by having support workers care for her other two sons while she spends her days in hospital with Nicholas.
A GoFundMe page has been set up by family friends and has so far raised more than $27,000 of its $30,000 goal.
‘This latest diagnosis has rocked Elena to her core and she desperately needs our help even though she won’t ask,’ the organisers wrote on the page.
Ms Reed said: ‘without this help we would never be able to see the other side’.
Ms Reed said she wants to take Nicholas on a holiday to Singapore as it is a dream of his to do so.
‘I would so much like to keep my word,’ she said.
