My Neice (7) and nephew (5) were diagnosed with Erythopoietic proto porphyria in 2017. In layman's terms they are allergic to UVA,UVB and some visible light. I.e the sun! We want to raise money for the British Porphyria Association. They are an incredible source of information and support both emotionally and financially. The condition has a huge impact on their day to day life. SUN exposure has to be avoided and this is no easy task. EPP is a genetic condition which cannot be treated or cured.
The kids will spend their lives locked indoors during the day and will not enjoy things we take for granted like picnics in the park, days at the beach and even summer holidays abroad. Awareness is essential to make expensive treatment available to those who suffer worldwide at a reasonable cost. Currently the Scensse implant which would change Madison and Isaacs life, allowing them to feel the sun on their skin, travel the world and simply go to the beach or park with their friends would cost around £90,000 a year.
Please help us support the British Porphyria Association in any way you can.
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