A brave schoolgirl has completed her second round of gruelling radiotherapy for a deadly brain tumour.

Eddie Jackson, of Waltham Abbey, was diagnosed with a terminal, inoperable Diffuse Intrinsic Pontine Glioma (DIPG) brain tumour in November last year.

Now her doting uncle has launched a book to help fund the fight to extend the seven-year-old's life.

DIPG is the deadliest form of childhood cancer with an average survival of just eight to 12 months.

Earlier this month Edie completed her second intense course of radiotherapy at University College London Hospital after an MRI scan in August, which revealed her tumour had grown.

Devastatingly, the tumour progression came despite the family crowdfunding to pay for costly private treatment in New York.

In March Edie travelled to the United States with her mum, Lois, 39, dad, Craig, 40, and brother, Charlie, 10, to take part in a Convection Enhanced Delivery (CED) trial, designed to extend her life.

CED is a method by which chemotherapy is delivered directly into the tumour and costs £245,000, which the family raised with the help of relatives, friends and the community.

Craig Jackson said: “The trip to New York was a major upheaval for the entire family, but we made it without hesitation. We hoped the trial would be more successful, but since we got back, Edie became more and more poorly.

“Despite the setback, we’re not giving up, and continue to look for new treatments. We are in the waiting pool for CAR-T cell immunotherapy in Seattle and the same type of treatment in California, however the latter has informed us that without US health insurance we would need a guarantee of one million dollars. Additionally, the doctor who looked after Edie in NYC is exploring a new trial using ultrasound, but he is still waiting for approval. The drug isn’t currently approved in this country either and is unlikely to be any time soon. It is extremely frustrating and, sadly, time really isn’t on our side."

Edie’s uncle Dan Adams, 35, has written a children’s book, ‘Grandad’s Lost His Glasses’, with proceeds from the sale of the book going to help fund Edie’s Fight. The charming story, a fun and adventurous tale with the underlying message of helping one another, features Edie and her grandad, David. It also stars Edie’s big brother Charlie and their much-loved dog Coco, the family’s Cockapoo, who is always by Edie’s side.

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Dan, who lives in North Weald, said: “I am inspired by Edie every single day and wrote the book to make her smile and, importantly, to raise as much money as possible towards her treatment.

“One of the terrible things about this monster of a disease is that you feel so helpless, so the book is my way of helping. Once I had the idea for the book, Edie was all the inspiration I needed. Being able to raise some of the money Edie needs gave me the determination and left me in no doubt I would make it happen.”

Dan added: “The book is a source of great pride; I have enjoyed the process and will get an immense amount of satisfaction from kids enjoying reading it. But it is bittersweet. Fundraising efforts like this would not be necessary if the UK was dedicated to funding brain tumour research to the required levels and investing in specialist infrastructure, as well as being committed to the acceleration of clinical trials. For as long as this support remains absent, we will continue to fight on all fronts.”

The book is available now via Kickstarter. Initial funding will cover production and distribution, with all profits going directly to Edie, to help with any additional medical visits and treatment, physical therapy and clinical trials.

To support Edie and her family, visit their fundraising page: https://www.gofundme.com/f/ediesfight?fbclid=IwAR1VDqXyLV96oD6cKPmBkLJlhR9Y_xGw4BTxDMTvHpvsyl5W2Zpa1qhSuk4

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