A mother of two sons who are suffering from rare genetic condition has been about to raise £250,000 in 12 months to help find a cure.
Karen was about to give birth to her second child, when she was told her 18-month-old son Simon had Hunter Syndrome - a degenerative genetic condition that slowly robs sufferers of their ability to walk, talk and eat.
Most sufferers die before they reach their teens.
Mikey, the son she was carrying, also had the same condition.
She was told there was no cure, no treatment and little research being done into the condition, which only affects boys.
“It was horrendous,” says Karen, 56. “All I’d ever wanted was to be a mum.
“As a parent your instinct is to protect your child and do anything for them, so to be told there was nothing I could do to help them was devastating.”
Nurse Karen, from Rochdale, decided she would try to help fund research into a cure, raising £250,000 in 12 months.
She continued with her fundraising when Simon and Mikey reached the age of eight and started showing signs of decline, despite knowing the research she funded would never be able to help her own children.
Cruelly, Karen was hit with another blow when her third child, four-year-old Katie, was diagnosed with Leukaemia in 1994.
Katie had chemotherapy but three years later was so ill she had a cardiac arrest and Karen had to perform CPR. She was then told her daughter had six weeks to live unless she had a bone marrow transplant.
“That seemed the cruellest blow of all. I thought I had a healthy child yet now I had three dying,” she said.
Mikey was a perfect match, but by then his condition was so advanced, there was a 40% chance he would die during the operation.
Karen was faced with an impossible choice, but a week later Mikey was diagnosed with an umbilical hernia which needed surgery, and doctors could extract the bone marrow at the same time.
The transplant was a success, but Mikey died shortly afterwards, and Simon died a year later. Both boys were 12.
“Mikey saved her life,” said Karen. “As much as it tears my heart out not having them, they gave me the inspiration to do all we’ve achieved."
Despite her grief, Karen never stopped fundraising. She launched The GEM Appeal in 1994 and has raised more than £2.6 million to date.
The research she has helped fund has developed an enzyme therapy that has reversed symptoms in some patients, a feat Karen calls a ‘dream come true’.
Now Karen has been recognised by The Daily Mirror’s Pride of Britain Awards , which in partnership with TSB , honour Britain’s unsung heroes.
Winners include inspirational people like Karen, people who have risked their lives to save others, and adults and children who have overcome incredible obstacles.
Nikki will collect her Special Recognition award on Monday night at a star studded ceremony at London' Grosvenor House Hotel where guest will include Prime Minister Theresa May, Prince Charles, Simon Cowell and a host of celebrities.
"This treatment will stop genetic disorders developing in the young and will allow these children to lead more or less normal lives. It is wonderful news because I now know other children will not suffer and die like Simon and Michael,” she said.
“This is a dream come true and I did not think it would happen for an awfully long time."
The Pride of Britain judges said: “I don’t know how she has survived everything she has been through, and the fact that her fundraising has helped fund treatment that could save other families from a similar ordeal is just incredible.”
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