Ollie Knocker in his specially-adapted ski buggy on an Alpine slope, assisted by ski instructor Pascal
HE has a rare and debilitating muscle disorder - but he refuses to let it stop him living life to the full.
Former York College student Ollie Knocker, 18, can hardly pick up a pint of milk, but he still managed to pass his driving test at the first attempt, take to the Alps on a specially adapted buggy on skis and get in to Oxford Brookes University.
Now his friends and family are planning to stage a starlight Valentine's Ball in Ollie's honour to fund research into his mysterious genetic condition, Bethlem myopathy.
Among those hoping to turn up is George Craig - Ollie's best friend at school and lead singer of One Night Only, the North Yorkshire school band which has just clinched a major record deal and is enjoying Radio 1 airplay. Ollie was a keen drummer at school until his disability worsened in his hands.
The ball will be staged at the newly-opened Burythorpe House hotel and restaurant, between York and Malton, on Saturday, February 16.
Ollie's mother, Anne, from Huggate, near Pocklington, said: "Doctors are on the verge of what we hope is a major breakthrough in treating this very rare disorder.
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"Some very encouraging work has taken place in the labs - but more research is needed before clinical trials can take place safely on humans.
"Every penny we raise - through ticket sales, auction items or donations - will go directly towards this specific research project, so that Ollie and others like him with Bethlem myopathy can have hope for the future.
"The ball is our way of helping Ollie help the researchers."
She said the disorder, for which there is currently no cure or specific drug treatment available, weakened muscles in many parts of Ollie's body and his lung capacity was just 40 per cent of what it should be.
"But fortunately, his heart muscles are not affected and the disorder, which was genetic, has not been inherited by his brother or sister.
"Ollie is a real inspiration - he never moans about his condition and is as keen on going clubbing as anyone.
"He is quite a notable sight going around town in his buggy!"
* Tables of ten for the black tie Valentine's Ball cost £600 and are available by telephoning Burythorpe House on 01653 658200, or by email valentines@burythorpehouse.co.uk Anyone who would like to pledge an item for auction can do so through the same contact details.
What is Bethlem myopathy?
PROFESSOR Kate Bushby, Ollie's consultant and professor of neuromuscular genetics at the University of Newcastle upon Tyne, said Bethlem myopathy was a form of muscle disorder caused by faults in the collagen genes.
"There are many types of muscle disorders and at the moment it can be difficult to reach a precise diagnosis," she said. "Work ongoing here at Newcastle University has defined this diagnosis in detail. The next challenge is to try and work out ways that treatments can be developed. Working with patients like Ollie and understanding how his condition affects him is crucial to moving the work in the field forward."
The disorder was named after the Dutch doctor who first described the condition.
A great example to the many people and families who instead of embracing life to the full no matter one's (dis)abilities, choose to put all focus on the vulnerability aspect and insist on being kept somehow sheltered or apart from the community.
Ollie and his friends and family sevre as an inspiration.
A great example to the many people and families who instead of embracing life to the full no matter one's (dis)abilities, choose to put all focus on the vulnerability aspect and insist on being kept somehow sheltered or apart from the community.
Ollie and his friends and family sevre as an inspiration.
And credit where it's due - good to see the Press sub-editors and writer print some positive local stories for a change, without sensationalising the headlines.
Well done Laycock and the subs, more of this please, and you can actually make York a better place.
And credit where it's due - good to see the Press sub-editors and writer print some positive local stories for a change, without sensationalising the headlines.
Well done Laycock and the subs, more of this please, and you can actually make York a better place.
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