Ellie's Fight

We are raising money for lifesaving treatment to help fight my girlfriend's brain tumour. Below is Ellie's story:

 

My world was shattered on the 28th December 2021. After months of dizziness and an initial diagnosis of vertigo, I was sent for an MRI scan. The scan found a brain tumour... not the news I expected.

 

I was sent for a biopsy on 18th January and then met with the doctor who told me the devastating news that I had a grade IV H3K27M diffuse midline glioma which is inoperable due to its position on the brain stem cell. It is unfortunately a very aggressive form of cancer where the only treatment offered in the UK is a course of radiotherapy which will not cure the tumour but will hopefully shrink it temporarily.

 

I was sent away from this appointment heartbroken in a flood of tears believing my life was over. All the things I had dreamed of had just been stolen from me: getting married, buying a house, having children. I was at my lowest, a 22 year old with no future, given 12 months to live, the constant thoughts of leaving my family, my boyfriend Jack and friends behind.

 

This news devastated me and my family. The people around me told me I couldn’t give up which was hard to hear given the news I had just received. This tumour has stolen my independence, I cannot even walk without support. I started my 6 weeks of advanced radiotherapy on 3rd February believing this treatment would just extend my life by a short period of time.

 

Through weeks of research my boyfriend and family discovered ONC201 which is a drug made for my specific brain tumour. The drug is currently in phase II of medical trials and is only available in Germany. ONC201 has been shown to prevent tumour growth and reduce the size of the tumour. We have spoken to various families across the UK who are using ONC 201 which has allowed them to regain normality again and hope for the future. Unfortunately, the cost of this medication is £5,000 a month which is the reason for this fundraising. Ellie's Mum Karen will be ordering ONC201 on a monthly basis for Ellie to take.

 

The discovery of this medication has changed my outlook on life. Those dreams that were shattered have started to come back, I realised ONC201 not only gives me hope but a real chance of a future. I am currently fighting for my life and I am determined not to let this cruel disease take what's mine.

 

We are asking for your help with this and any donation will be gratefully received. This is my only chance to have a future and we won't be able to do this without your support.

 

Every donation no matter how small will go a long way to help with this treatment. I can’t express my thanks enough for joining #elliesfight.

Updates to follow