Just after my 22nd birthday, I was diagnosed with a rare, highly aggressive, malignant and currently incurable, spinal cord tumour (Diffuse Midline Glioma, H3 K27M Mutation). Within just 5 weeks following diagnosis, I was given the prognosis that I have limited time to live.

There are less than 100 people diagnosed with this type of tumour in the UK each year, all of them will be between the ages of 3 to 25 years old and sadly all of them will die. The tumour grows rapidly within the Central Nervous System and has a devastating impact either on the spinal cord or the brain.

There have been no advances in treatment for this type of tumour for over 40 years. This needs to change so that other people and their loved ones face a more positive future and my real hope is that a cure can be found one day. In view of the rarity of the disease, there is limited information available which myself and my family have found difficult.

With the help of those around me, I have decided to set up this page to raise money to support a research project currently taking place within the Cancer Research UK’s (CRUK) Children’s Brain Tumour Centre of Excellence at Addenbrookes Hospital in Cambridge. This innovative research project has been jointly funded by CRUK, Great Ormond Street Hospital and Brain Research UK. The research is specifically studying tumours in the Central Nervous System in children and young adults with this rare mutation to identify targeted treatment options for the future. This particular research project is close to my heart because of its relevance to my specific type of tumour, it’s based at Addenbrookes where I have received treatment, and also with my love of children and my future aspirations to have been a primary school teacher it feels like a perfect fit.

In addition, I would like to share with you that whilst I knew there was something wrong, it took multiple GP appointments across several months before I was finally referred to a specialist. I know that for my cancer an early diagnosis would have been highly unlikely to make a difference to my prognosis, but for other cancers it could. We all know our own bodies, so no matter what your age, if something doesn’t feel right, don’t delay seeking professional advice, and don’t give up until someone listens to you.

I would really appreciate it if you could show your support by donating to and sharing this page.

Thank you,

Emily x