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GEM Appeal celebrates
25 years of fundraising
“I wanted to fund research and find a cure; I certainly
wasn’t just going to sit around and accept that my
children were dying.”
Karen was approached by Consultant Paediatrician
Dr Ed Wraith with a request for money to be raised
to extend the Willink Unit at the Royal Manches-
ter Children’s Hospital, which would be a base for
research into the disorder that her two sons were
dying from, as well as other genetic disorders that
were prematurely ending many young lives.
“With the help of the people of Rochdale, £250,000
was raised in the GEM Appeal’s first year”, Karen
said.
“This was the start of our major fundraising.”
As the years went by, the GEM Appeal grew to have
11 trustees and 16 committee members who are
mainly Rochdale based. They became the strength
and drive for the amazing success that the GEM
Appeal has become today.
Karen Johnson, founder of the GEM Appeal charity,
is celebrating 25 years of fundraising in 2019. Karen even continued fundraising when her healthy
third child, Katie, was diagnosed with leukaemia and
Founded in 1994 after Karen’s sons, Simon and given six weeks to live.
Mikey, were diagnosed with Hunter Syndrome, the
GEM Appeal (‘Genetics. Enzymes. Metabolics.’) “I had all three of my children potentially dying at the
raises money to fund research and find cures for same time,” she said.
genetic diseases.
“When Katie was seven, she relapsed and couldn’t
25 years ago, Karen, who lives in Bamford, was told tolerate the chemotherapy anymore. She received
that her 18-month-old son had Hunter Syndrome, a bone marrow transplant from Mikey, who was a
a rare genetic disorder that causes abnormalities in perfect match for her.
organs due to deficiencies of the enzyme iduronate-
2-sulfatase (I2S), located on the X chromosome. “Now a healthy 29-year-old, Katie is engaged and is
living a happy life. She is the only known person to
Then, 8 months pregnant with her second boy, Karen have had a bone marrow transplant from someone
was told that there was a 50% chance that he would with Hunter Syndrome.”
have Hunter Syndrome too.
Tragically, both Karen’s sons lost their lives to the
Karen said: “At that time, there was no treatment incurable disease at the age of 12.
and no hope for children diagnosed with rare genetic
disorders, and very little research was being done to www.gem-appeal.co.uk
change the chances of survival.
REAL ROCHDALE - WINTER 2019 8
