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Karen Johnson, from Rochdale, took home the Special Recognition award at the Pride of Britain Awards for her dedication to raising £2.6 million pounds towards research into the degenerative genetic condition, Hunter Syndrome.
Speaking on accepting the award, Karen said: “It felt amazing, it was really humbling. There were so many inspiring people there. It was just fabulous.
“Also, Take That presented me with the award, which was brilliant as I’m a lifelong fan.”
Hunter Syndrome is a condition which involves a build-up of harmful molecules that cause permanent damage, affecting appearance, physical abilities and organ functions.
With both her sons, Simon and Mikey, dying from the rare disorder at the age of 12, Karen resolved to help find a cure.
She began fundraising in 1993, setting up the GEM (Genetics. Enzymes. Metabolics.) Appeal charity, which has raised £2.6 million pounds towards equipment and research to date.
Karen, who lives in Bamford, even continued fundraising when her healthy third child, Katie, was diagnosed with leukaemia and given six weeks to live.
“At one point, all three of my children were dying.
“When Katie was seven, she relapsed after a cardiac arrest and couldn’t tolerate the chemotherapy any more. She received a bone marrow transplant from Mikey, who was a perfect match for her.
“Now she’s a healthy 26-year-old.”
After winning the ‘Pride of Granada’ title at last year’s Pride of Britain awards, Karen’s continuous efforts have led to her being victorious once again, taking home the Special Recognition award at this year’s ceremony.
The winners come from tens of thousands of public nominations and stories of remarkable individuals discovered by a team of researchers.
They were whittled down to a shortlist from which the judging panel, made up of celebrated figures in national life, chose the winners.
The awards was broadcast on ITV, Tuesday 1 November, but you can still watch it on the ITV Hub.