In 2012, my brother Will was diagnosed with multiple tumours, cause and severity unknown, after a period of illness. Our family’s life proceeded to change forever. We found out, through an amazing team at Guys Hosp and UCLH, that Will, Dad and I carry the SDHB gene. This is very rare, but does mean we can grow Paraganglioma’s - a rare tumour, that can develop into cancerous masses. Health professionals around us were dumbfounded, as Will’s case particularly was rare due to his age and the complications around his tumours. Dad and I were more lucky, and our tumours that had developed over time were removed. What followed has been years and years of testing and scans for all of us, but for Will, a constant rollercoaster of surgeries, nuclear therapy, radio therapy, meds and head scratching. Unfortunately we are at a point now where his cancer is growing, and systemic treatment through Chemotherapy is all that’s left. His super human power to manage this, complete his education and continue being the sassy, funny, sweet and kind soul we all love never ceases to amaze us all, and we are so proud. So we have have decided to do something a little super human (kind of!) ourselves, and in September, my partner Carl and I will be completing the 3 peaks challenge (Ben Nevis, Scafell Pike, and Snowden in 24 hours) to raise money for Amend. Amend is a charity that supports individuals and their families with this and similar rare genetic endocrine conditions. Not only is this support as part of providing a network and psychological support, but the well needed research into these conditions. Doctors have said to Will “you’re writing the book really now” - they just don’t know. It feels so important to raise awareness and funds for a organisation who strive to help with just that.
Fundraising page
The National Three Peaks Challenge takes in the highest mountains in Scotland, England and Wales, often in 24 hours.