A boy could become the first child in the world to undergo groundbreaking cancer treatment
Up until mid-April, Lucas Posey-Bottomley had been a healthy until his parents were given horrific news of his diagnosis for terminal cancer.
He was approaching his 10th birthday when the family’s lives were turned upside down.
But Lucas could be given hope through experimental treatment being tried out in the US.
His parents are praying their son could become the first child in the world to receive treatment for his brain cancer that could save his life.
Despite being told he has a 0 per cent chance of survival – and just months left to live – Lucas’s family have not given up on his recovery.
Jamie Bottomley, Lucas’ dad told LeicestershireLive, his life had been normal, with him and his son still practising karate every week without fail.
And then everything changed.
After falling sick on a couple of occasions and then struggling with his balance, Lucas was taken to hospital and diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare and aggressive form of cancer with no chance of survival.
The news came completely out of the blue and has left the family in a state of near-permanent shock, with Jamie saying no-one could have seen this coming.
Jamie said: “He hadn’t been really ill before the diagnosis. He was sick once and we thought nothing of it at first, but then he was again and then he had balance problems, so that’s when we took him to the doctors,” Jamie said.
“It was there where we were told the news – and I’m still in shock now.
“I still find it hard to believe, to be honest, and I’m a 37-year-old man, so I don’t think anyone can appreciate how a child will take it.”
Affecting children between the ages of 3 and 9, DIPG is a highly aggressive brain tumour located within the brain stem.”
Only 30 children in the UK are diagnosed with it each year and those who are diagnosed typically live for just six months.
As for Lucas, he has just undergone an intensive round of radiotherapy and is now back home – but the treatment has taken its toll.
The youngster is now unable to walk or talk, and dad Jamie says even though the family has done all they can to avoid discussing the word ‘cancer’, he believes Lucas is still aware of the severity of his condition.
“He knows he has a tumour, and while we’ve not told him he’s going to die, I think he knows. He probably knows it and that’s heartbreaking,” he continued.
“It’s scary and I don’t think anyone can appreciate it truly unless it happens to them, but no-one should go through it. No parent should have to tell their child he’s going to die.”
But the family still has a glimmer of hope now that Lucas has been put forward to the clinical trials of a treatment pioneered by SonALAsense, an American-based company that develops sonodynamic therapies for brain and other lethal cancers.
The firm made contact with Jamie via the UK charity Funding Neuro, began trials on a very small number of adults last year, but if all goes to plan, Lucas would become the first child in the world to undergo the experimental treatment.
The clinical trial involves taking a drug that’s designed to attract cancer cells before then killing them with an ultrasound device. The trial could last months, but is dependent on Lucas’s cancer having not spread to his spine – something they’ll find out soon following scans.
Lucas could also participate in a German drug trial that would see him take drugs that directly attack the cancerous cells.
Thought to be a short-term solution while Lucas remains in his weakened state, it could pave the way for him to go to America.
“From being told we had a 0 per cent survival rate to being given this hope, we hold onto it dearly,” said Jamie.
“We hope Lucas’s MRI will say the cancer’s not spread and hopefully that means we can go to America. Anything we can do to help him, we’ll do it. It’s what any parent would do.”
Funding for the treatment will come from SonALAsense, but money for Lucas and his family’s living costs while in America will need to be covered by themselves.
Last month, the family launched a GoFundMe page to help ensure Lucas got to see as many great things as possible before he died, but that has now been turned into a travel fund.
So far, more than £30,000 of the family’s £100,000 target has been raised – an amount that’s taken the family by surprise.
“The amount of support has been phenomenal and I can’t thank people enough,” said Jamie.
“We are so hopeful for what could happen and are desperate for good news. I’m trying to stay strong and keep it together for the family, but it’s difficult.
“Our whole world got turned upside down and we’re still trying to recover from that, but maybe this will be what we need and what Lucas needs.”