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Many of you will know I have 2 gorgeous girls. What you may not know is that one of them suffers from a rare chronic condition called Behcets disease. There is no cure for this, but has to be managed on a daily basis. It varies severity but can develop in individuals to serious life changing consequences such as vision loss and strokes.
In terms of what it looks like for us currently, on a good day, she just looks like a child with a constant need to scratch. At its worst, we have had blurry vision, many tearful night asking us to make the itching to go away. Asking when will she just be normal again. Scratching through her skin til she bleeds. Scarring on arms and legs. Some awful comments by others at school, and becoming very self conscious that she’s somehow different. Needing to get changed in private to stop comments, which then conversely reinforces that she is different. Ulsers in painful areas of the body. All in all, for us, it has a real impact on her managing the pain and irritations, her ability to take part in activities and self confidence in her own skin.
Behçet's disease is so rare that even most healthcare professionals know little or nothing about it. As such, there is little support for families. One of the things Bechets UK are trying to do is run a family day. I wanted to raise for a specific thing rather than to a general pot. After talking to the organisation:
£1000 Would fund a Behçet's Family Day which takes place each year across the UK. The Family Day give families affected by Behçet’s the chance to spend time together, meet other families as a potential new support network.
This year they even plan to do it at Skreens Park, Chelmsford which is local to us, and so I’d like to make this a reality for them.
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