Thanks for taking the time to visit my JustGiving Page. 

My husband David and I have two children, Madison who is 8 and Isaac who is 6. They both have a genetic blood disorder called Erythropoetic protoporphyria (EPP for short) no one on  either side of our family has the condition but our genes have caused the mutation. EPP will now run in our family and be passed from generation to generation.  Erythropoetic Protoporphyria is an ultra rare condition that affects only 5,000-10,000 people in the world. In laymen’s terms they are allergic to the sun.  Exposure to UVA/UVB and some visible light causes a chemical reaction under the skin which results in severe pain and discomfort, burns, swelling, skin damage and liver disease. 

In my doctors words “we have been tasked with the greatest challenge which is protecting our children from the sun!”  During the spring and summer months we have the daily battle and anxiety of trying to keep both our children covered and out of the suns glare. This doesn’t stop when we are inside as the UV rays and visible light that causes their blood to boil can still get to them. There is no cure and treatment is expensive, they have creams and tablets which act as a barrier but they don’t provide full protection from UV rays. 

We have challenges and tasks ahead just like everyone else does, but I’m determined to help raise some money and awareness with the aim of making my children’s lives and generations to come, easier. Please help me do this by making donations, coming along to my events and sponsoring any challenges I set myself throughout the year. 

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