On 5th May 2015 (ironically World Ependymoma Awareness Day), our family was blindsided when our fit, healthy and full of life 7 year old son Charliewas diagnosed with a brain tumour. One week we were just a normal family, happy and sweating the small stuff as you do, and the next we were thrust into an unfamiliar and terrifying world with no way out.

Charlie had been unwell for little more than a few weeks really, with minor lethargy, morning vomiting and the odd headache. Within a week, he had undergone surgery at the John Radcliffe in Oxford and due to the amazing skill of the brilliant neurosurgeons - and a lot of luck - the tumour, which was very close to Charlie’s brain stem, was successfully removed.

Sadly any feelings of relief after the successful surgery were a distant memory when the biopsy results revealed the tumour was a grade 3 anaplastic ependymoma - a rare and malignant tumour that affects less than 40 children a year in the UK. 

Because these tumours have a high chance of recurring, Charlie needed radiotherapy (ependymomas are largely chemo resistant) to give him the best chance of long term survival.  We were then told that due to a number of factors, Charlie was an ideal candidate for a more targeted type of radiotherapy called Proton Beam Therapy not yet available in the UK. Even though this meant we would have to up sticks and travel to the US for 9 weeks, we didn’t hesitate to apply, and within 3 weeks the whole family were on a plane to Oklahoma City.

My family and I just want to do all we can to help raise funds for research into this terrible disease so that Charlie and all the other children both now and in the future can have a chance for full recovery.

Thank you so much for your support.

Vicky