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Benji Read was diagnosed with cancer a day before his first birthday and was expected to live for only three months — instead the young Christchurch boy enjoyed another five years.
“It’s surreal, really. It just feels surreal.”
So says Benji’s father, Sam Read. He told The Star he has been suffering sleepless nights since his youngest son died on July 12.
“I definitely don’t feel I’ve been all right. Sleep is one thing that’s hard to come by at the moment. I’m waking up early and feeling extremely sad.
“I just keep thinking about Benji.”
Benji was born during the Covid-19 lockdown on April 2, 2020.
Read said that time with his boy was “really nice” without others coming around to visit.
Just under a year later, on April 1, 2021, Benji was found to have an untreatable brain tumour and diagnosed with Li-Fraumeni syndrome.
“He was really sick when he was younger. They did scans and saw that he had the brain tumour, took a biopsy, and put a shunt in his head to drain the fluid out.
“They said that would give him three months.”
Read said adjusting to this new reality was “very hard at the start”.
“He didn’t look great after the surgery where they put the shunt in. We actually managed to get him home on palliative care, and there were nights where we would set alarms in the middle of the night just to check on him because they said that he would just stop breathing in the middle of the night.
“So it was very, very taxing for us — very, very draining just thinking that it could be any minute.”
Benji, though, “he just got on with it”.
He dreamed of either being a sports star or a policeman when he grew up.
While Benji needed a walker to help hold him up, he still loved being active.
“He never asked any questions about why he was in a walker or why he didn’t feel so good some days.
Read said picking the Spreydon School pupil up at the end of the day could take 20 minutes, “because everyone would know Benji’s name, and he would be shaking everyone’s hands”.
“He was just unstoppable, really.”
Benji was also a “petrol head”. He loved his father’s 1971 Ford Capri — “he was all about helping me with that and loved when it started up”.
Read’s favourite memory with Benji is racing tandem go-karts in Nelson when he was four.
“He was absolutely fizzing. On that trip, we sort of did a few firsts, being in a camper van, lying down and seeing the stars.”
And Benji was starting to get “better and better”.
He had his latest MRI scan in April, and it showed his brain tumour had shrunk.
“And then two weeks before his passing, he was complaining of a sore head, and his appetite had changed a little bit.”
More scans found his tumour had grown significantly.
“That was quite a shock.”
Benji spent eight nights in hospital before his parents were told he only had a few weeks left.
They decided to bring him home. It turned out he only had four days left.
“It was a lot nicer having him at home with all his certificates on the wall around him and a lot of colour and balloons and that sort of thing.”
Benji slept in the living room next to a log fire in his mum’s Hillmorton home, and was visited by family, friends, teachers, and his support staff in his final few days.
Benji died surrounded by his family, Read said.
“He was well loved by a lot of people. He was an amazing, strong wee boy.”