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hi guys some of you may well know i have a sister who died when she was 7 she had a very rare type of epp,technical term is called erythropoietic porphyria,along with 2 holes in her heart,in those 7 years my sister became my everything she died in 1989,but her memory lives on in my house me and my children talk about her all the time,we visit her all the time,however i have decided to run the needles xc half marathon on the isle of wight,on the 27th may,where my mum now resides with my brother,gran and stepdad,i am so so passionate about this cause because of what happened to my darling little sister,i miss her so so much even now,some days are unbearable being without her,so this is why i am doing this,i understand money is tight for everybody right now,but if u could afford just a little it would be so greatly received by the british porphyria association,this disease isnt well known and if i can help just even one person with this disease i will have done my bit for my family and my sister,love u all thank u so much neen x

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