It was a very special week because I had my very first Birthday! We went away camping and had a great time. On my birthday we all went on a special train, my first ever train journey and just for me the Sun came out all day. We even wore T Shirts!!!!
I have made so many special friends already this year and they are helping me with all my fundraising. The latest event to add to your calendar is a Salsa dance party to be held in Mold's Theatre Clwyd on the 14 June. For more information you can visit their website on http://www.salsa-inferno.co.uk/. If you are organising something to help us research this syndrome please let my Mummy know and she will put the details on this blog.
On Tuesday there should be an article in the Independent paper written by my Mummy. There have been lots of articles in the paper lately and we hope it will help people learn more about my condition so we can help other people like me.
Don't forget there is a big Motorbike ride across America in aid of Moebius Research Trust at the end of June and you can read all about their trip by visiting their website at http://www.kiltsacrossamerica.co.uk. Any businesses that would like to sponsor it can contact them or my Mummy.
Thanks for reading my blog.
Isaac (aged 1)
Isaac's photo
About Me
- Isaac Hughes
- I am a very happy person but because I was born with Moebius Syndrome I cannot show people when I am smiling. My face muscles are paralised which means I cannot smile or frown. Moebius is a very rare syndrome and there are only around 200 people in the Uk with it. This means there is little research into it. My Mummy and Daddy are trying to help raise money so they can fund research into this condition. For more information you can visit www.moebiusresearchtrust.org We are going to do lots of fundraising over the next 18 months and all donations would be gratefully received. Watch this space for fundraising events that are coming up. Big hugs and thanks Isaac.
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