In December 2021 Ellie received the devastating news that she had a brain tumour. Following further scans and a biopsy we learnt that Ellie’s tumour was a DIPG (Diffuse Intrinsic Pontine Glioma). There are over 120 different known types of brain cancer and DIPG is the most fatal of all. DIPG grows in the PONS area of the brainstem making surgery impossible.
There have been no major advancements in treatment in over 50 years, with the only standard treatment available being palliative radiotherapy. Ellie completed her radiotherapy in March 2022. As a family we couldn’t accept that was it, just go home and make memories…
With on-line research and with the benefit of social media we connected with other families across the world who found themselves in the same situation. We explored alternative medicines and treatment and this gave us hope.
Unfortunately, Ellie’s condition deteriorated rapidly in February 2023 at which time Ellie began palliative care. Our beautiful girl passed away in July 2023.
Ellie selflessly donated her brain to DIPG research to the Institute of Cancer Research. The research team, based in London are extremely grateful, without Ellie’s selfless gift they would be missing a crucial window into the development of this tumour, and the potential influence and impact of treatments and the immune system throughout its course.
We will continue Ellie’s work through the Foundation supporting the research that Ellie has already contributed to. In addition, the Foundation aims to help brain tumour patients and their families, in particular families who find themselves in the horrendous situation of a DIPG diagnosis. Ellie was our shining light, may her light continue to shine through the work of the Foundation as we honor her memory by helping others as Ellie did wherever we can.