So would my Mummy and Daddy…………..
For a long time I have wanted to raise money for Moebius Syndrome, a condition that affects our neighbours little boy, Noah. The Moebius Research Trust have very kindly agreed to contribute towards the cost of transporting my bicycle and purchasing my kit for this very special event in my life and I would like to raise as much money as possible for them and will continue to do so in the future too.
Noah has an amazing face and an even more beautiful laugh. However, he will never be able to show the world how he is feeling. Noah has something called Moebius Syndrome which means that he does not have any nerve or muscle function to the face, and as a result of this he will never smile, frown, look suprised or blow kisses; he will never convey any facial expression. As well as an inability to use the muscles of the face, Moebius Syndrome can also affect other areas of the body. Noah is also missing toes on his left foot, missing bones in his fingers, has severe talipes (also known as clubfoot), restricted eye movement, feeding and speech difficulties.
Noah is two and whilst his parents Nathan and Trinity have come to terms with this syndrome, many other families haven’t. Like many of the stories you hear about on the news, you don’t really appreciate or understand them until you are personally affected by them and Moebius is no different. Nathan & Trinity (and Noah!) have very kindly allowed me to highlight the personal aspect of families dealing with Moebius Syndrome. Nathan and Trinity find it extremely hard to cope with not knowing or having a rational explanation as to why Noah has Moebius Syndrome. There is no treatment, there are no drugs or therapies that will give Noah a smile, there is no cure but the Trust I am nominating are trying to raise awareness and funds to initiate research into the syndrome.
The trust has been set up for two main reasons:
· To find 100 people with Moebius Syndrome who will assist the trust with the DNA testing
The Moebius Research Trust was initially launched in September 2006. After a chance meeting with a Geneticist in Edinburgh, it soon became clear that if enough test cases with the condition would be willing to help with Micro Deletion Testing, then the answer to the cause of Moebius Syndrome was possible. They believe that within three years an answer is achievable allowing the Trust to publish the results worldwide.
Although you may not have been touched by, or heard of
this condition before today, this money and research means you could make a big
difference to the 200 known people in the UK affected by Moebius and the 3000
people worldwide.
Thanks for taking the time to read my JustGiving page. Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So if you would like to please dig deep and donate now.
Thank you!
Roz*/Roslyn* *delete as appropriate!
xx
