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Dying Lizzy Adams cannot have life-saving treatment in UK

A mum says she has been left broken after hopes that her daughter could receive potentially life-saving treatment in the UK were shattered.

Lizzy Adams, 13, from Conyer, was diagnosed with a rare and inoperable brain stem tumour earlier this year.

Known as Diffuse Intrinsic Pontine Glioma (DIPG), the condition has a 0% survival rate but her family had set their hopes on her receiving treatment at Harley Street in London.

Lizzy Adams with her mum Kath
Lizzy Adams with her mum Kath

The experimental procedure would have cost £120,000 and family and friends had set about the mammoth task of raising the cash but have since received the heartbreaking news Lizzy wouldn’t be able to have the treatment as her tumour contains fluid, making it impossible to do the operation.

They are now desperately looking for other options, including treatment in Mexico, where a couple of children are reported to have shown promising reactions to chemotherapy through an artery direct to the tumour.

Lizzy’s mum Kath said: “It’s broken me. We could now go to Mexico for treatment but that would cost £350,000 and we’re not even near £120,000.

“We’re going to keep fundraising. We can’t give up. We will find something else.

“If we got a miracle then we might be able to go to Mexico.”

The treatment they had wanted was called Convection Enhanced Delivery (CED).

"We've got to stay positive, we can’t give up and accept it" - Lizzy Adams

Originally developed for Parkinson’s, it involves the implantation of fine catheters into the brain, through which drugs are delivered directly to the tumour.

They had raised more than £41,000 towards it.

“We’ve got to stay positive, we can’t give up and accept it,” added Kath, who has six children.

She also reiterated the importance of signing a petition asking the government to fund research into paediatric brain cancer and provide earlier access to experimental drugs.

Kath hopes that if it’s successful, no other families will need to go through what they’re going through.

Lizzy’s 16-year-old brother Rylie Attrell made a heart-wrenching plea on YouTube for help to save his sister.

The five-minute film shows him saying: “When you’re being told this is what your sister’s got and there’s nothing you can do about it unless you’ve got the money, it breaks your heart.

Rylie Attrell
Rylie Attrell

“Me being her older brother, my mum and dad and family members are meant to be the ones to look after her.

“When you’re told there’s nothing you can, you’re lost.

“There were times when I didn’t want anything to do with it and tried to block it out and there were times when I wanted to know everything and when you do find out everything it hits you hard because what happens to people with these [tumours] is horrible.”

He added: “It chokes me up and gives me goose bumps because you never imagine it to be your own, you hear about it on the news and you feel sorry but you never realise how harsh and hard that is until it hits you and your family.

“Every day is harder because every day is another day when you’re meant to be raising money.”

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