Story
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On Tuesday November 28th 2023, after various symptoms that spanned a few weeks, my son Jacob was found to have a mass in his brain. This mass was identified as a tumour that turned out to be completely inoperable but could be biopsied.
One week later on Tuesday December 5th we received the news that the tumour was a DIPG (Diffuse Intrinsic Pontine Glioma), sometimes knows as DMG (Diffuse Midline Glioma).
This news was truly devastating, as DIPG/DMG tumours are not only inoperable, but also incurable. We were told that evening that our then 5 year old son would die. There was no fight to be had. The average survival time being just 9-12 months.
After an intense course of Radiotherapy which ultimately had no effect, and months and months of very difficult to manage symptoms, Jacob passed away on Monday June 17th 2024, less than seven months after diagnosis.
The statistics that surround this awful tumour are just as awful as the tumour itself:
- On average only 30 cases of DIPG/DMG are recorded every year in the UK.
- Median survival is around 8 months.
- Accounts for approximately 75% of all brain tumours in children
- It has a survival rate of less that 1%
- It almost exclusively effects children
Funding for research around DIPG is criminally low and Abbies Army are the UK's leading charity raising money for research into this as there has been little to no change in the outcomes for children who suffer this horrendous disease in almost 100 years since it's first recorded instance.
I am taking part in the Royal Parks Half Marathon not only in memory of my beautiful little boy, but to raise funds on behalf of Abbies Army to help fight this disease so that children in future that receive the same diagnosis, will one day stand a fighting chance against it.