Lily is a bright and bubbly 13 year old from Eastwood in Essex. She loves school, cooking, skincare, music and all the other things kids her age enjoy.
In October Lily was diagnosed with a aggressive malignant brainstem tumour called Diffuse intrinsic pontine glioma H3 K27MK. This is a tumour of the central nervous system that affects sight, hearing, speech, swallow, breathing and heart rate.
Due to the make up of this tumour it cannot be removed. In the UK the standard treatment is Radiotherapy causing a tumour response in 70% of patients. Carrying the H3 K27MK mutation means that this tumour almost always comes back within 6-9 months. When it does it’s usually rapid and progressive.
Lily has undergone Radiotherapy which took its toll on her body. She finds it difficult to walk and dress herself, she has had to learn to eat again. During radiotherapy Lily fought off flu and aspiration phemonia. After a weeks break from radiotherapy, she completed the course and it has since reduced her symptoms and she now recovers well at home with her parents and younger brother Josh.
After extensive research there are clinical trials emerging in the US that show very promising results. Some of our friends and family have already kicked off some successful fundraising events for us.
However, we have been advised for a years treatment in the US it will cost around £300,000. This includes the cost of the trial, accommodation, flights and medical treatment she may need while she’s there.
As a family we are doing all we can to raise this money however being such a massive amount we had to make the tough decision to set up this go fund me page.
Nothing prepares you for any of this. We now face the realisation that our care free life is over and now we are caught up in hospital appointments, an entourage of doctors and consultants.
Life can change in an instant. No warning, no reason. Please share this page, donate if you can or just share our events.