National brain tumour research funding needs to increase to £30-35 million a year
Family overwhelmed by support as six-year-old Edie diagnosed with deadly brain tumour
A desperate family say costly private treatment is the only hope to save their six-year-old daughter Edie, who has been given just months to live.
Craig and Lois Jackson, from Waltham Abbey in Essex, have been overwhelmed at the response to their fundraising appeal to give them as much time as possible with Edie. They say they are living every parent’s worst nightmare knowing that this could be their last Christmas together.
Edie was diagnosed with a terminal, inoperable brain tumour just four weeks before Christmas. The tumour is a high-grade Diffuse Intrinsic Pontine Glioma (DIPG), the deadliest form of childhood cancer with average survival of just eight to 12 months from diagnosis.
Edie’s dad Craig, 39, said: “To contemplate losing our beautiful little girl is something we will never come to terms with and is something that makes us feel numb whenever we think about it. We are facing every parents’ worst nightmare; this could be our last Christmas with our precious daughter.”
Edie has just finished a 13-day course of radiotherapy but the position and nature of DIPG brain tumours means surgery is not possible. There are no further treatment options available to them on the NHS. Edie’s aunt and uncle, Emmie and Dan Adams, set up a GoFundMe page and a Facebook group called ‘Edie’s Fight’, to raise money to fund additional medical treatment. Their fundraising total currently stands at more than £136,000.
Hugh Adams, Head of Stakeholder Relations at Brain Tumour Research said: “Our hearts go out to Edie and her family, whose world has been shattered by this cruellest of diagnoses.
“The type of treatment that Craig and Lois are seeking for Edie is likely to be extremely costly and possibly located overseas. At a time when they are digesting the worst possible news you can receive as a parent, the fact that they are having to self-fund treatment, is unacceptable.
“Funding for research into brain tumours needs to be increased to £35 million a year in order to prevent more families from being plunged into this nightmare. We owe it to Edie, to her family and to everyone for whom DIPG becomes a reality.”
- What needs to happen to improve outcomes for brain tumour patients
- Radiotherapy treatment page
- In Hope Stories
If you found this story interesting or helpful, sign up to our weekly e-news and keep up to date with all the latest from Brain Tumour Research.