My name is Eleanor. I am 3 years old. When I was 2 ½ weeks old my Mummy and Daddy were told I had Prader-Willi Syndrome. I was in the special care baby unit at the time. I came home at 3 weeks old, but Mummy and Daddy had to keep feeding me milk through a special tube in my nose until I was 8 months old, because I wasn’t strong enough to suck from a bottle. I couldn’t smile at the people I love until I was 1 year old.

I have lots of people that help me. I see 11 different special people at the hospitals. They are all very nice and friendly. I have lots of stickers on my bravery chart for all the tests I have had done.

I have to have special injections every night to help me grow, because at the moment I am a lot smaller than all my friends. I have special oil in my bath, and have to have lots of different creams put on my skin. I have a magic puff inhaler that makes my chest feel better.

I like to try my best to be like my friends, but I always seem to be a little bit behind. It doesn’t matter though, because I like watching them, and Mummy and Daddy help me lots. I was 2 years and 3 months old before I could walk on my own. It was really good to join in with the others. I still find walking very difficult though, and I fall over lots.

When I am older I will face many more challenges, including always feeling hungry. This makes Mummy and Daddy very sad (and I think I will be sad too when it happens!). I will never be able to live on my own and will always have to have Mummy, Daddy or another carer to help me. Mummy and Daddy are very upset that people like me with Prader-Willi Syndrome have nothing to really help them, so they are working very hard with some of my friends’ mummies and daddies to find something that may help me in the future. They started the Foundation for Prader-Willi Research UK. We are all doing a big walk on 8 September 2012. It is a 5km walk. My Physiotherapist said it is 10 times harder for me to do anything physical. This means that for me to do the 5km (3.1 miles) walk would be like you doing 50km (31 miles)! I am very wobbly on my feet, and I tire very easily, so I cannot do the walk. I will be going round with my Granny in my pushchair. But when we round the last corner, and can see the finish line and the balloons, I am going to get out of my pushchair and walk to the finish line all by myself. This might not sound much to many, but this will be very difficult for me, especially since it is uphill! I hope one day I can to the walk all the way.

Please will you sponsor me to walk to and across the finish line all by myself.

Love Eleanor xx :-)

 

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