My 4 year old daughter Amelia has just been diagnosed with a high grade neuroepithelial brain tumour with MN1 alterations. This is a rare kind of brain tumour with around 30 children affected in the whole of Europe. This means we have to travel overseas to receive Proton Beam Therapy.

Proton Beam Therapy is a type of radiotherapy that uses Protons (energised particles), instead of beams of x - rays, that are used in conventional radiotherapy. The benefits of Proton Beam Therapy over conventional radiotherapy is that the beams are carefully planned to target the exact area the tumour is situated with complete accuracy, meaning fewer healthy cells nearby receive a dose of radiation. This is particularly important in young children as their brains are still growing and developing. Proton Beam Therapy has fewer long term side effects such as impaired growth, learning, memory and infertility. Proton Beam Therapy is currently unavailable in the UK but is available in two countries overseas.

We have been told that Proton Beam Therapy is the best option for Amelia's rare type of tumour and that she is eligible to receive this treatment funded by the NHS. The funding covers travel, accommodation and treatment but does not cover meals, laundering, toiletries, comforts for Amelia whilst there and other living expenses. We also want to make this treatment as painless and as positive as we can for her, so we would like to be able to take her on outings whilst receiving treatment. We are expected to be overseas for a total of 9 weeks, this is going to be a challenging time for us as we will be away from home comforts and the support of family / friends.

This overseas treatment is an expense that we were unprepared for as Amelia has to start treatment as soon as possible we have not had time to save up. We are not from a wealthy family nor can afford to get in to masses of debt that will be payable years after treatment has ended. Any donation big or small would be extremely appreciated.

I have decided to create a blog capturing every step of Amelia's journey from beginning to end to raise awareness of childhood brain tumours and to provide comfort and support to others that are going through similar experiences. This blog will include diaries, photos, videos and resourceful information.

Thank you for reading our story.

You can follow the journey with the following links.

https://ameliasplayroom.wordpress.com

https://www.facebook.com/ameliasplayroom/

https://www.youtube.com/channel/UCNlKOTmu-X4KhlHfL09TUUQ