Apply to raise £100,000 for cancer treatment that could save the life of a terminally ill boy

Lucas Posey-Bottomley had been healthy until mid-April and before his 10th birthday when his parents received the devastating news of his diagnosis of terminal cancer

A boy could become the world’s first child to undergo breakthrough cancer treatment

Lucas Posey-Bottomley had been healthy until mid-April when his parents received the devastating news of his terminal cancer diagnosis.

He was approaching his 10th birthday when the family’s life was turned upside down.

But Lucas could offer hope through an experimental treatment being tried in the US.

His parents are praying their son could be 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 percent chance of survival – and only a few months to live – Lucas’ family has not given up on his recovery.

Jamie Bottomley, Lucas’ father told LeicestershireLive, his life had been normal, with him and his son still unerringly practicing karate every week.

And then everything changed.

After falling ill a couple of times and then struggling with his balance, Lucas was rushed to the hospital and diagnosed with diffuse intrinsic pontine glioma (DIPG), a rare and aggressive form of cancer with no chance of survival.

The news came out of the blue and has left the family in near-permanent shock, although Jamie said no one could have seen it coming.

Jamie said: “He wasn’t actually ill before the diagnosis. He was sick once and we didn’t think much of it at first, but then he was sick again and then he had balance issues, so we took him to the doctors,” Jamie said.

“We were told the news there – and I’m still in shock.

“I still find it hard to believe to be honest, and I’m a 37-year-old male, so I don’t think anyone can gauge how a kid is going to take it.”

DIPG affects children between the ages of 3 and 9 and is a highly aggressive brain tumor located in the brainstem.”

Only 30 children in the UK are diagnosed with it each year and those who are diagnosed typically live for only six months.

Lucas has just undergone intensive radiation therapy and is now back home – but the treatment has taken its toll.

The boy is now unable to walk or speak, and dad Jamie says that although the family have done their utmost not to discuss the word ‘cancer’, he believes Lucas is still aware of the seriousness of his condition.

“He knows he has a tumor and although we haven’t told him he’s going to die, I think he knows. He probably knows and that’s heartbreaking,” he continued.

“It’s scary and I don’t think anyone can really appreciate it unless it happens to them, but nobody should go through it. No parent should have to tell their child they are going to die.”

But the family still has a glimmer of hope after Lucas was suggested for the clinical trials of a treatment being developed by SonALAsense, a US-based company developing sonodynamic therapies for brain and other deadly cancers.

The company reached out to Jamie through UK charity Funding Neuro and began trials on a very small number of adults last year, but if all goes to plan Lucas would be the first child in the world to undergo experimental treatment.

The clinical trial involves taking a drug designed to attract cancer cells before killing them with an ultrasound machine. The process could take months but is contingent on Lucas’ cancer not having spread to his spine – something they will soon find out after the scans.

Lucas could also take part in a German drug trial where he would take drugs that directly attack the cancer cells.

Intended as a short-term solution while Lucas remains in his weakened state, it could pave the way for him to go to America.

“From the news that we have a 0 percent survival rate to this hope, we’re holding on,” Jamie said.

“We’re hoping Lucas’ MRI says the cancer hasn’t spread and hopefully that means we can go to America. Anything we can do to help him, we will. Any parent would do that.”

Funding for the treatment will come from SonALAsense, but Lucas and his family’s living expenses while in America will have to be covered by themselves.

Last month the family started a GoFundMe site to ensure Lucas was able 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 goal has been raised – an amount that has surprised the family.

“The amount of support has been phenomenal and I can’t thank people enough,” Jamie said.

“We are so hopeful of what could happen and desperate for good news. I’m trying to stay strong and stick together for the family, but it’s difficult.

“Our whole world has been turned upside down and we’re still trying to recover from that, but maybe that’s what we need and what Lucas needs.”