Desperate family call on Sun readers to help girl, 7, get pioneering cancer treatment

LITTLE Edie Jackson is battling the deadliest form of childhood cancer, but she still returned to school this week with a big smile.

The seven-year-old is in a race against time to have pioneering treatment that could prolong her life and her parents are turning to you, The Sun on Sunday’s generous readers, to help raise the funds they desperately need.

Edie’s dad Craig and mum Lois were given the devastating news that her brain tumour had grown after chemotherapy in New York failed earlier this year.

The procedure cost £245,000 and was paid for with donations.

Craig, 40, a heating engineer, from Waltham Abbey, Essex, said: “It is the worst possible news.

“We found out two weeks ago that the tumour has grown by 15 to 20 per cent since lockdown.

“Edie is our warrior princess, she calls the tumour the Naughty Nibbler.

“We haven’t told her it’s grown, but she’s smart — she will know soon.

“We live in constant fear that the special milestones, like starting Year Three at school and occasions we celebrate as a family, will be her last. It really is a race against time now.”

‘We weren’t sure she’d make it through night’

Edie was diagnosed with incurable and inoperable Diffuse Intrinsic Pontine Glioma (DIPG) ten months ago.

DIPG has the worst survival rate of childhood cancers yet the Government has provided meagre funding for research and there has been little progress towards a cure.

With the help of their MP, Dame Eleanor Laing, Edie’s parents are lobbying Parliament for a £35million cash injection to help improve survival rates.

Their petition currently has 109,000 signatures, meaning it should be considered for debate in the Commons.

And you can add your weight to the petition, and donate to help Edie..


To date, the family’s campaign has raised £247,173.

To help Edie, you can donate at ediesfight

Dame Eleanor told The Sun on Sunday: “My heart goes out to the family. I want to do whatever I can to help. In the first instance I have asked the Secretary of State for Health, Matt Hancock, to consider whether there is any way that ministers can intervene in order to make these drugs available on an experimental basis in the UK. He appreciates how urgent it is.”

Craig and Lois, 39, an account manager, who also have ten-year-old son Charlie, first realised something was wrong when Edie complained of double vision and started squinting in one eye.

An optician referred her to a GP, who sent the family to a specialist.

As DIPG affects as few as 20 to 30 children in Britain each year, little research has been carried out.

The family raised enough funds for Edie to go to America at the beginning of the year for a Convention Enhanced Delivery (CED) trial, which involved doctors pumping high doses of medication directly into the tumour.

Craig added: “We were hoping it would have been more successful but she got more and more poorly when we got home from New York.

To sign petition

The Jacksons are also calling on the Government to better fund DIPG research.

See petition. petitions/300027

“In some ways lockdown was a blessing because it meant we got to spend more time together as a family, but Edie’s symptoms have started to slowly get worse over the past month.

“Her balance isn’t great but we noticed she was more wobbly on her feet.

Her left eye has started to turn in and now her right arm and leg don’t work properly.

One night she was on her bed and her breathing pattern changed.

“We knew that was another symptom and there was nothing we could do.

That was the worst moment.

“We were not even sure she was going to make it through the night. She is aware that she needs help walking again and she is embarrassed about it.

“She was so active before, doing football and dance classes, but now she’s having to use a buggy, and she doesn’t want anyone to see her in it.”

Meanwhile, the Jacksons are looking for new treatments for Edie.

Talking to us to mark Childhood Cancer Awareness Month, Craig said: “There could be trials in Zurich in Switzerland and another in Seattle in the States but they are not ready yet.

“There is a doctor in New York who has developed a new drug which he believes will help but it isn’t approved in this country so we can’t use it yet.”

Another hospital in California has offered Edie immunotherapy treatment but the family would have to raise £750,000.

Craig said: “Since we don’t have American health insurance we would need to guarantee the maximum amount it could cost for the 28-day stay in hospital, and then we might get some back.

“We are fundraising for that now. We have wiped out all our savings and are starting from scratch again. Having to contemplate losing our beautiful little girl imakes us feel numb. That is why we are appealing to your readers to help in any little way they can.

“Edie is still happy, we saw that when we went to school this week.

“We are just focusing on the now, the happy moments, that way it is not so bad.”

Hugh Adams, of the charity Brain Tumour Research, said: “It is unbearable to think that here in the UK one child every fortnight is diagnosed with DIPG.

“This is why we are calling on the Government to address the shocking lack of investment for research into this disease.”

Q&A: Deadly condition but there is hope

WHAT IS DIPG? It is a type of brain tumour that grows into other tissue so that cancer cells mix with healthy cells.

WHO IS AFFECTED BY IT? Primarily children aged between five and seven.

A sufferer may have problems with vision, weakness of facial muscles, arm and leg weakness, unstable balance and co-ordination, difficulties walking and speaking.

Fewer than ten per cent of children survive two years from diagnosis.

IS IT ALWAYS FATAL? Tragically, yes, because the tumours are virtually impossible to remove without damaging healthy brain tissue.

WHAT CAUSES DIPG? This is unknown.

HOW RARE IS IT? It is the second most common primary, high-grade brain tumour in children.

WHAT TREATMENT IS THERE? Radiotherapy. Also steroids to help reduce some of the pressure caused by the tumour.

There are worldwide clinical trials testing possible treatments.

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