Karen Johnson nominated for Pride of Britain award

Want to buy this photo?

Katie Hoather, Andrew Nutter and Karen Johnson at the GEM Appeal Strawberry Sparkle lunch

GEM Appeal founder Karen Johnson has been nominated for a Daily Mirror Pride of Britain award.

Karen started the GEM Appeal after her sons Simon and Mikey were diagnosed with Hunter Syndrome. Her eldest son Simon was diagnosed with the degenerative condition at aged 18 months and she found out when she was pregnant that her youngest son Mikey was also carrying the condition.

Being told that there was no cure, no treatment and that little research was being done, Karen decided to raise money in the hope that it would lead to a cure.

Following news from doctors that they were researching the gene but needed £250,000 to extend their lab, Karen held an annual ball, which is still being run to this day, and hit her fundraising target after 12 months.

Sadly, Simon and Mikey died within 18 months of each other, both at the age of 12 and even when daughter Katie, Karen’s only child not to have Hunter Syndrome, was diagnosed with leukaemia, Karen continued with her fundraising and has gone on to raise more than £2.6 million to fund a new treatment.

Karen was put forward for the award by charity supporter and TV star Denise Welch and was recently told that she had been shortlisted for the award.

Speaking about her nomination, Karen said: “I am thrilled and honoured to be nominated for a Pride of Britain award. It is such a prestigious award and to now be a finalist is amazing.

“Ever since I started fundraising I have always had one aim in mind and that is to find a cure for children who suffer and die like my boys did. I am delighted that there is now a treatment available that slows down and in some cases reverses the illness and the fact that the fundraising has made that possible makes me so proud.

“I am determined that one day, we will find a cure and these disorders will be consigned to the history books.”

Hunter Syndrome only affects boys; sufferers lack an enzyme needed to break down certain sugars, which then get stored in the body’s connective tissues.

Despite the ups and downs in her life, Karen has never stopped fundraising and research has gone on to develop an enzyme replacement therapy that helps reverse the symptoms in some patients.