Story
January 6th 2019 myself and a few friends are taking on a SAS Fan Dance race test - It is a 24k route march in the Brecon Beacons in freezing temperatures that is infamous within the ranks of all UK Special Forces. There will be pain and tears people! We putting ourselves through this torture to help raise funds for Josh - His story is below, please give it a read or watch and anything you could spare to donate would help greatly! Thanks so much! - Craig and the boys
Josh is 30 years old and was born with a rare skin condition, Xeroderma Pigmentosum. This genetic disorder means his skin has a reduced ability to repair DNA damage, specifically that caused by Ultra Violet light.
Despite the best efforts Josh and his family, over the course of his life, he has developed several skin cancers that had been successfully treated without life-threatening impact; until now.
In February 2017, Josh was diagnosed with angiosarcoma, a cancer affecting the inner lining of the blood vessels.
After months of unsuccessful surgeries, chemotherapy, trial drugs and, most recently, radiotherapy targeting the lymph nodes in my neck, standardised treatments have been deemed ineffective.
Because of the unique characteristics as a Xeroderma Pigmentosum patient, specialists believe that the immunotherapy treatment, Pembrolizumab, could extend Josh's life. However, this is not readily available on the NHS for angiosarcoma patients and costs around £100,000 per year.
Your generous contributions will help to fund these drugs, their administration and associated care.