What would you do for your little girl?
This is the question that has now become part of our life. Instead of teaching our little girl about the world we have to teach the world about her and Rett syndrome. We've had to come to terms with knowing there will be no univercity, no prom night, no first love, no concerts, no waiting outside till 1 am to pick her up, no weddings etc etc We have also had it bout home to us that Rett Princesses can take there wings over night with zero notice so imagine that thought every morning when you go to check on her???
How rare is Rett Syndrome? 1-15000 approx, to put this into perspective every day in england there are 870 cases of cancer diagnosed. Rett syndrome is diagnosed in 17 girls worldwide a day!
Is it cureable?
Simply No (thus far although its been cured in mice in laboratory conditions)
Our aim is to raise funds to go towards her future equipment needs including lift to downstairs and wheelchairs through to widening of doorways etc and specialised bathroom equipment, ramps to the door, specialised transportation (wheelchair access vehicle) and just the dignity of getting cleaned up in private not on a public toilet floor as she gets older. As her dad i will carry her till i can't walk myself but i have to set provision for her future needs. Please bear in mind her needs can literally change overnight, tomorrow morning she could wake and be inable to walk!
Thanks for your donations and please reference the person you are sponsoring!
Love Ant &Abigail
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