Barking bowler strikes a blow for rare syndrome
A TEN-PIN bowler took part in a 12-hour marathon of games to help the fight against a genetic condition. Trevor Deal, of Ripple Road, Barking, bowled non-stop at the City Pavilion in Collier Row. He and his friend Jacqueline Walsh organised the fundraiser
A TEN-PIN bowler took part in a 12-hour marathon of games to help the fight against a genetic condition.
Trevor Deal, of Ripple Road, Barking, bowled non-stop at the City Pavilion in Collier Row.
He and his friend Jacqueline Walsh organised the fundraiser to highlight the plight of people with Stickler syndrome.
Close friend, Tina Stevens, has a 19-year-old daughter, Rebecca, who has it.
Jacqueline said: "Stickler syndrome is a life-limiting condition - many sufferers do not live past 21.
"But most people have not heard of it and that is why we are trying to raise awareness."
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The pair have created a group on social networking website Facebook.
More than 300 people have already signed up to support their cause in just two weeks.
Tina said: "Most of the time Rebecca can be the most lovable person.
"At other times she can be quite violent, but that's mainly aimed at me, and occasionally close family, and is brought on mainly out of frustration at her limitations.
"But she has touched the hearts of many people throughout her life and, locally, she is known by many, many people."
Like most Stickler sufferers, Rebecca has pain with her joints through osteoarthritis.
She also suffers from severe myopia (short-sightedness), hearing problems, kyphoscoliosis (a severe spinal problem), impaired speech and muscle wasting.
Many Barking and Dagenham businesses got behind the charity bowl, putting collection boxes in their shops.
Trevor said: "Lots of people have offered to help.
"The response has been really fantastic.
"We have got donations coming from across the globe.
"People in Canada have seen our campaign and want to help.
"And we would like to say a special thank you to Robert Illingworth, who runs a company called TNK, based in Leeds, for his support."
If you would like to support Stickler syndrome awareness contact Jacqueline through Facebook at www.facebook.com/sticklersyndromeawarenessgroup.