Meet Aria, my 3-year-old niece and my big brother Carl's daughter.

On Tuesday 4th May 2021, Aria's 3rd birthday, we 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.

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. Sadly there is currently 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.

Aria is now receiving radiotherapy to shrink the tumour and this is the only treatment available on the NHS here in the UK, however all this does is buy a little bit more time (usually around 6 months). Aria is also taking TBL-12, a potential new treatment that has been found to significantly inhibit the growth of tumours and so is promising in DIPG.

The family are however needing to try something more direct in targeting the tumour, and so are desperately trying to raise sufficient funds to get Aria on ONC201 - this is a new drug that trials suggest can kill cancer cells and not healthy, normal cells. It penetrates the blood brain barrier; something which other treatments have failed to do to date and therefore have not been able to reach the tumour directly. This treatment is therefore of significant interest however again it is extremely costly as the initial consultation fee alone is £600 then it would be an eye-watering £1,000 per week for the drug. Taking Aria to the US where this trial is held would cost even more.

We as a family are doing everything in our power to try to raise funds to give this little girl a chance by allowing the family to afford this promising new treatment which without your help would not be possible. I therefore joined my brother on 5th June in climbing Mt. Snowdon to raise awareness of this awful disease and we continue to do everything we can to get the funds needed.

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.

Aria's parents have set up a Facebook page so that you can follow her journey here: https://www.facebook.com/profile.php?id=100068976705399

Thank you for taking the time to read our story.

Elaine. x