Tuesday, January 6, 2015

MOEBIUS SYNDROME IN THE NEWS

This actually appeared a few weeks ago, but in case you did not see it, here it is--once again it has to do with young Moebius hero Jack Marshall, from the UK:

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Against all the odds a teenager suffering from a rareneurological disorder won the fundraising award at the SuperKids Awards ceremony.
It was an award sponsored by the Doncaster Free Press and presented by DFP display manager Eve Hanson.
The 16-year-old winner of the honour was Jack Marshall, who suffers from Moebius Syndrome.
The condition means Jack is unable to walk unassisted, has difficulty with his hearing and his sight and is unable to smile.
Despite this he has completed the Great North Run and the Great Manchester Junior runs on several occasions. The determined teenager has not let anything stand in his way and has also climbed Yorkshire’s Three Peaks – Pen-y-Ghent, Whernside and Ingleborough – a combined height of 2,153 metres.
He has also climbed the highest mountain in Wales, Snowdon, at 1,085 metres, to raise thousands of pounds for blood cancer charityLeukaemia and Lymphoma Research.
This year the 16-year-old attended the Stephen Sutton Teen Hero Award at Wembley, created in memory of 19-year-old Stephen Sutton who raised £5 million for charity before his death from cancer in May.
After those awards Jack said: “I do what I can to help other people. Yes I have Moebius Syndrome but that is not a terminal illness like blood cancer can often be.
“I am very proud that my name is linked with an inspirational person like Stephen Sutton and I shall aspire to honour his memory.”
Jack’s mum Linda is very proud of her son and proud of the fact that he was given such a prestigious honour and also received recognition in the SuperKids Awards.
She said: “Moebius Syndrome is known as life without a smile, but Jack smiles from inside in a big way.
“I am proud of him every single day of his life – the way he lives his life, the way in which, despite his disability, he devotes himself to helping others. He is an incredible young man.”
Jack began fundraising in 2006 and each October when his mum asks if that is it he says: “Of course it is,” before pausing and adding: “That is until next year,” before roaring with laughter.
His proud mum added: “He is just so humble about this.”

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