© Jonathan May

Jonathan May: The photograph I took of Stanford, the young boy in Kenya with a rare disease, Xeroderma pigmentosum, an autosomal recessive genetic

disorder in which the ability to repair damage caused by ultraviolet (UV) light is deficient, is the most important image I’ve taken. I was able to win the Head On portrait prize in Sydney with the image I took, and give him the money to help with ongoing hospital costs. Unfortunately, it wasn’t a fairy tale ending though, and the disease can’t be cured, only managed, so it is an ongoing battle for young Stanford. I am still in touch with his mother and am continuing to help him on his journey.

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