Aria Vs DIPG

On Tuesday 4th May 2021, Aria's 3rd birthday, her family were given the utterly heart-breaking news that the brain tumour that had been discovered the week before was Diffuse Intrinsic Pontine Glioma (DIPG) - a terminal (inoperable and untreatable), aggressive brain tumour. 1% of children make it 5 years with this condition from diagnosis, and the average time is just 9 months.

This page is to raise as much money as possible so Aria can have the ONC201, this is a new cancer drug. Early results in brain cancer clinical trials suggest that this drug can kill cancer cells but not normal cells and may be effective in patients with a specific genetic mutation in their tumor: the H3 K27M mutation. This mutation primarily occurs in tumors that occur in the midline region of the brain (thalamus, pons, spinal cord). About 50-60% of children with high-grade glioma (and 70-90% of children with Diffuse Intrinsic Pontine Gliomas, or DIPG) have the H3 K27M mutation. About 10% of adult gliomas have the H3 K27M mutation. The ONC201 costs a lot. So we need to raise as much as possible.

DIPG is usually only found in children and is in the Pons region of the brain (brain stem). Here, cancerous cells are mixed with the normal healthy cells and therefore due to its delicate location, it is impossible to remove. The only treatment currently available is radiotherapy (which Aria has started) which will solely prolong life by about 6 months. It is not a cure, and sadly currently there is no cure.

Just 40 children a year in the UK are diagnosed with this condition; 40 families too many, but it is therefore a massively underfunded area of research.

I ask, please, no matter how big or small a donation, anything will help this family tremendously. I hope we can help raise awareness of this dreadful condition in the hope that one day, that medical breakthrough will be found.

Thank you for taking the time to read, and thank you for your support

Please donate by using this link, Thank you!