In 2020 my daughter was diagnosed with one of the worlds rarest cancer. She was only 12 years old. We were sent home from hospital and told there is currently no cure and no standard treatment that works. We will scan her every few months until the cancer grows enough that we will try one of the very limited options available, that have a very low success rate in doing anything, for a short period of time.

EHE is so rare that it effects less then 1 in 1 million people. Research into the cancer receives very little support from big Pharma, Government and other cancer charities.

The EHE rare cancer charity along with the other foundations world wide are driving the research to find a cure, which is making great progress but relies on donations to continue.

My daughter is now turning 16 and in celebration of that we would like to raise some money towards the research programme. Thanks to a chemo drug my daughter has had no growth for two years and feels well. However the current outlook is she will be on and off treatment for life. We enjoy life to the max and Disney holidays are top of the agenda! We live in hope that one day it will be cured completely. #just live