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IT'S NOT TOO LATE TO DONATE...
My daughter, Charlotte, organised a sponsored 10 mile cycle + 5 mile run on 15 November 2009 to raise money for her beautiful friend, Annie (aged 14) who has a rare genetic disorder called Niemann-Pick (affecting approx 500 children in the world). Annie was diagnosed with this degenerative disease just before she was 10 years old - before that she was a healthy, young girl. Annie started at my daughter's primary school just after she was diagnosed with this disease.
Annie is such a wonderful, sunny girl who is always smiling and laughing, despite her condition.
We have always known that Annie had an illness, but recently my daughter realised that Annie's condition is worsening. This September, Annie left my daughter's high school to go to a Special Needs school...SHE IS LOVING IT AT THE NEW SCHOOL and talks about the exciting things that she gets up to!
Annie's family are re-doing their house to incorporate a lift for their daughter to use, as she finds it very hard to go up/down stairs...this will help the family tremendously - so Charlotte wanted to raise money for the lift. However, they have recently been given funding for the lift (THANKFULLY), so Charlotte decided to raise as much as she could for the Niemann Pick Disease Group (details of the website below). She did a 5 mile run and a 10 mile cycle (I wanted to tie our dog to the back of the bike...as she often complains about taking him for a walk!!).
Our local newspaper (Express and Echo) have recently had an article regarding Annie, as there is also a girl who lives about 5 miles away who has the same disease (as this disease is so rare, it's strange that they live so close but it is comforting for Annie's family to be in touch with the other girl's family). The newspaper also published a feature about Charlotte's run/cycle...which raised a lot of money.
We will also be having a fun Family Bingo Night on 6 December to raise more cash...
Sorry if I've gone on, but Annie is such a special girl and we want to do all that we can for her..
Annie is featured on the following site:-
http://www.niemannpick.org.uk/
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