Last updated at 16:20, Tuesday, 15 January 2013

THE parents of an “inspirational” man who died due to a rare genetic disorder have paid tribute to his courage and sense of humour.

TRIBUTES: Sean Waiting, pictured taking his daily insulin injection. Mr Waiting, who had the rare condition Alstrom syndrome, died on Sunday

Sean Waiting died on Sunday morning with parents Terry, 69, and Jean, 66, by his side.

Mr Waiting had the rare condition Alstrom syndrome, an extremely rare genetic disorder which rendered him blind and deaf and caused him to experience heart and kidney problems, as well as diabetes.

By living to the age of 43, Mr Waiting defied the odds to become the oldest person in the UK with Alstrom syndrome, which usually sees people die much younger.

Mrs Waiting, of New Leys, Barrow, said she and her husband had always been amazed at the way he dealt with the disorder.

“He lived everything to the full and he was just a fighter. No matter what his disability was, he never complained and never asked ‘why has this happened to me?’,” said Mrs Waiting.

“Everybody he came in contact with has so many fond memories of his sense of fun and his sense of humour.”

As well as enjoying horse riding, going to the gym and supporting Manchester United, her son also took every opportunity to promote the interests of disabled people.

She said Mr Waiting was taken ill on Friday and died from a suspected heart attack in Furness General Hospital.

“We were with him when he died and held him and cuddled him and he just drifted away so peacefully,” said Mrs Waiting.

Terry McSorley, a senior case worker for MP John Woodcock, said he remembered Mr Waiting as a regular visitor to various Barrow and Furness MPs who he lobbied to try to improve the lot of disabled people and the wider community.

“Sean raised issues concerning access to public transport for people with disabilities, the dangers street furniture could present to the blind and partially sighted, the need for IT support for people with disabilities, the postcode provision of drug treatments and any number of issues that he felt were unfair, whether it was for people with disabilities or not,” said Mr McSorley.

Margaret Burrow, honorary secretary of the Barrow and District Disability Association, said Mr Waiting had been an inspiration for other people with Alstrom syndrome, as well as being subject to frequent tests to help further understanding of the condition.

“He was a great inspiration,” she said.

First published at 16:14, Tuesday, 15 January 2013
Published by http://www.nwemail.co.uk