UPDATE: |’He was just being sick, then two days later we were told he didn’t have long to live’ News

Lenny went for a routine eye-test. Within hours a large tumour was found in his brain.

A ‘little fighter’ and ‘superhero’ has tragically died aged just seven after a gruelling battle with cancer. Lenny Jax passed away on April 5 after a two-year fight against glioblastoma – an aggressive type of grade four cancer that invades the brain and is incurable.

His grieving mum Sophie has now spoken out about the family’s ordeal and raised important awareness about the signs of the brain tumour, which could often easily be passed off as a viral infection or bug.

Lenny, from Stockport, was described as a ‘little fighter’ who ‘never complained’ despite multiple rounds of chemotherapy, radiotherapy and a trial drug from the USA which depleted his bones. He first began struggling with headaches and sickness in September 2022.

He then became lethargic and struggled to get out of bed in the morning. But it was only after booking in for a routine eye test that the truth was revealed.

Within hours, Lenny was being rushed in for emergency surgery on his brain at the Royal Manchester Children’s Hospital. It marked the start of an exhausting battle for the family as they fought to keep him alive.

“He had started getting headaches and was being sick in the mornings,” Sophie told the Manchester Evening News. “He couldn’t get up in the mornings and was exhausted.

“He had an eye test at school and they noticed his vision wasn’t what it should have been so we were referred for another eye test but was told it could be at least six weeks, so I booked him in privately.

“They noticed the nerves at the back of his eyes were swollen. We went straight to Stepping Hill Hospital for a CT scan, where they found a tumour the size of an adult’s fist on the right side of his brain.

“We were then sent to the Royal Manchester Children’s Hospital for surgery on his brain. It had been just a straightforward eye test and within a few hours he had been taken to surgery. It was the worst 12 hours of my life.”

The majority of the tumour was removed and sent off for testing. Within two days the family were handed the most devastating news imaginable.

A GoFundMe page has been set up to support the family. Donations can be made online here.

“They told us it was grade four glioblastoma. It was incurable. With it being so aggressive, the doctor’s words were that it was going to be tricky to fight, and that they didn’t think he would live longer than 12 months.

“It was terrible. Nobody can prepare you for it. You never think something like this would ever happen to you or your family.”

“He had just been being sick, then two days later we were told he didn’t have long to live. As a parent you just go into fight or flight mode.”

‘We were told there was nothing they could do’

According to Cancer Research UK, a glioblastoma is a ‘fast growing type of brain tumour’. All glioblastomas are grade four, meaning they are fast growing, cancerous tumours.

Two weeks after the surgery, it was found that Lenny had a leak on his brain, where he underwent a further operation and had a shunt put in, which knocked back him starting radiotherapy, Sophie said.

She added that Lenny received radiotherapy treatment daily in six week rounds and had to be put to sleep; causing him to rapidly lose weight. He also received chemotherapy and began ‘feeling sick and miserable’ due to the toll of the treatment.

Within a number of weeks, his platelets also dropped, meaning he had to be rushed into hospital again for an urgent blood transfusion. But despite the severity of his condition, Sophie says she never told Lenny the full truth about his diagnosis to enable him to continue trying to live as a happy go-lucky child.

It was in the summer of 2023 that a scan then revealed how the chemotherapy had stopped working – and that the tumour had re-grown, prompting another life-saving brain operation.

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But the family were then offered a lifeline, when it was deemed Lenny was suitable for a drug trial from the US. Sophie said he was the first child in the UK to accept the drug, which prolonged his life by 12 months and caused the remaining tumour, that couldn’t be removed, to shrink.

Despite this, the side effects including making his bones so brittle that he easily broke his femur and fractured ankle within a matter of weeks.

“We got told he was on end of life care and that there was nothing else they could do,” she said. “But then we were told he qualified for a drug trial from America due to a mutation he had.

“He was scanned every three months, and the tumour that was left had massively shrunk. But with him being a guinea pig essentially, it made his bones so brittle.

“But, we got another 12 months with him. Without it, he would’ve lost him much sooner. It was only in January this year that a scan showed that it was like a firework had gone off in his head and there were speckles of the disease everywhere.

“The doctors came to the decision that there was nothing else they could do. We stayed at home with him for as long as he could, and took him everywhere he wanted to go, but he slowly got worse with the sickness and headaches.”

‘I couldn’t be prouder to be his mummy’

Lenny went back into hospital in mid-March. Another tumour was found at the back of his neck. He was then moved to end of life care at the Francis House Children’s Hospice in Didsbury before he passed away on April 5.

Sophie added: “He spent his last week there. The staff were absolutely amazing and made it so much more bearable. It had been two-and-a-half years of non-stop medication. I can’t thank them enough.

“The Wednesday before he died we took him out for fresh air, and he was playing Minecraft on his PlayStation. His body deteriorated and he closed his eyes. Within two days he stopped breathing.”

Lenny was given the nickname ‘Lenny the Lion’ because ‘nothing phased him’, Sophie said. “He never complained about anything. He was constantly so happy and thankful he was here. He was a little fighter. A true superhero.”

A GoFundMe page has now been set up to support the family in his send off. Donations can be made online here.

Issuing a tribute on social media to Lenny after his death, mum Sophie penned: “Our beautiful brave super hero Lenny Jax has gained his angel wings in the early hours this morning. Words can’t describe the heartbreak we our going through now.

“The only thing that is sitting right with me is he is no longer in pain. No more hospitals, no more drugs, no more being told he isn’t allowed to do what little boys should be doing.

“He battled this awful disease with everything he had and I couldn’t be more prouder to be his mummy … you rest now my sweet angel .. love you always and forever.”