Story
Who am I?
I'm Joshua Barnfather. I'm 31 years old and I was born with a rare skin condition, Xeroderma Pigmentosum.
This genetic disorder means my skin has a reduced ability to repair DNA damage, specifically that caused by Ultra Violet light.
For my whole life, I've tried to avoid UV light. I've covered up during daylight hours, stayed indoors wherever possible and adjusted my life and environment to protect my skin and overall health.
Despite the best efforts of me and my family, over the course of my life I have developed several skin cancers that had been successfully treated without life-threatening impact; until now.
In February 2017, I was diagnosed with angiosarcoma, a cancer affecting the inner lining of the blood vessels.
I have had many unsuccessful attempts at face and lung surgery, chemotherapy, trial drugs and lymph node radiotherapy to tackle my cancer. I have also had long hospital stays battling serious infections and severe heart complications. After these experiences, standardised treatments have now been deemed ineffective for my case.
How your money will help
Because of my unique characteristics as a Xeroderma Pigmentosum patient, specialists believe that immunotherapy cancer treatment will be useful for me. However, this is not readily available on the NHS for my case and could cost around £100,000 per year, although there is a lot of uncertainty surrounding this.
Your generous contributions will help to fund this treatment and the associated care. Excess funds will be donated to a cause that encourages the same personalised approach to cancer treatment that is proving beneficial to me.
No matter how small, I am grateful for all contributions.
Thank you for taking the time to read my story.