£129k raised as brain cancer leaves Lily, 6, with months to live

Lily McKelvey, of Marks Tey, was diagnosed with diffuse intrinsic pontine glioma (DIPG) - which affects just 20 children...

Lily McKelvey, of Marks Tey, was diagnosed with diffuse intrinsic pontine glioma (DIPG) - which affects just 20 children in the world - on January 12 - Credit: McKelvey family

The family of a six-year-old with rare brain cancer who has been given months to live say they are "overwhelmed" at how their community has raised £129,000 for treatment which could save her life.

Dad Jack McKelvey says he and his wife Elizabeth are "never going to give up" fighting to save their daughter Lily after she was diagnosed with diffuse intrinsic pontine glioma (DIPG) - which affects just 20 children in the world - on January 12.

Lily McKelvey with her parents, Jack and Elizabeth

Lily McKelvey with her parents, Jack and Elizabeth - Credit: McKelvey family

Previously healthy, doctors initially thought Lily, from Marks Tey, had gastroenteritis when she began vomiting after Christmas.

After she continued vomiting, Lily's parents - who are expecting a brother or sister for the youngster in June - took her to Colchester Hospital's accident and emergency department.  

CT and MRI scans later revealed a mass on the back of Lily's head.

"We were absolutely devastated," said Mr McKelvey.

"It's hard to believe. I keep thinking that it's not true.

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"It happens to other people. You never think it'd be you in this position."

Lily McKelvey has a rare brain cancer which means she could have as little as six months to live

Lily McKelvey has a rare brain cancer which means she could have as little as six months to live - Credit: McKelvey family

Lily has since shown amazing strength by sustaining 13 sessions of radiotherapy, given as a form of palliative care to maximise her quality of life with her family.

"She's been really strong throughout," Mr McKelvey said after Lily finished her radiotherapy on Friday (February 5).

"She's been quite fatigued but she still plays. She has probably taken it better than most adults.

"She has never moaned. She has just got on with it. You can't believe how strong children are."

Her current life expectancy is between six and nine months.

A clinical trial in New York could provide the treatment needed to save Lily - but would cost about £370,000 and could mean the family have to stay abroad for months.

A campaign had already raised more than £129,000 by the end of Wednesday (February 10), despite the challenges of fundraising during the coronavirus lockdown.

Lily McKelvey has been brave in sustaining 13 radiotherapy sessions

Lily McKelvey has been brave in sustaining 13 radiotherapy sessions - Credit: McKelvey family

Yet the total has to be reached in a matter of weeks, as treatment needs to start within six weeks of her scan.

"I can't believe how Colchester has pulled together," said Mr McKelvey.

"It is overwhelming how much support we've actually had. We can't believe it. We're lost for words.

"People just see her smile in the pictures and it just gets to people.

"She's a normal six-year-old girl. Everyone who knows her knows how lovely she is.

"Adults don't deserve this, but for children it's horrible. It is someone who has got their whole life ahead of them.

"I'm never going to give up fighting for my daughter. I couldn't live with myself if we didn't do everything we could.

"We've got to try everything we can. We will keep fighting."

To donate to the appeal, visit the family's GoFundMe page.

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