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JOHANNA'S LEGACY; ANGELA RECALLS THE WORK HER GIRL DID FOR TRUST.. AND IT WASN'T IN VAIN Inspirational leukaemia victim's mum explains why she's still working for donor charity.

Byline: By Maria Croce

SHE was the vivacious young woman who charmed celebrities and the public into backing a campaign for more bone marrow donors.

Johanna MacVicar helped many lives, yet she lost her own battle with leukaemia aged just 27, in 2005.

Throughout her 11-year battle with cancer, her mum Angela was at her side.

Even after Johanna died, Angela kept campaigning to help others beat the disease.

She works for the Anthony Nolan Trust charity as a donor recruitment manager and has vowed to never stop trying to boost the numbers on the bone marrow donor register.

Angela, 48, said: "I don't do the job in Johanna's memory - because it never was just about Johanna. I do it because I know I can make a difference.

"We're all here for a reason and we have only so much time here.

"Johanna's time was spent, and she spent it well. She made a huge difference to other people's lives.

"I feel so privileged to have this job.

Not many people come home at night knowing they've made a difference to someone's life. It helps me cope, because it makes me feel I'm doing something that makes a difference.

"Johanna lost her life through leukaemia, yet it enriched our lives and made us open up to those around us. If I could take it out of our lives, I would - but I can't, so I look at the positive."

Johanna worked tirelessly to raise the profile of her condition in a bid to encourage people to join the register.

Sadly, a match couldn't be found for her in time, and Johanna's loss made a huge impact on the lives of Angela and her other daughters, Kendall, 23, Gemma, 25, and Brodie, 28.

But they try to remain positive.

Angela, of Bishopton, Renfrewshire, said: "The Trust didn't fail to find Johanna a match. Her match didn't join the register.

"The Trust are a charity of hope. They give people the chance to fight for life.

"Johanna never found the donor she needed so desperately, but she did find the hope that a donor could be found.

"If the Trust hadn't existed, I don't believe she would have survived for as long. They provided hope - as they do with everybody-but, in Johanna's case, the match just wasn't there."

Aged 16 in 1994, Johanna was told she had chronic myeloid leukaemia.

A bone marrow transplant was her only hope, but a match couldn't be found. Doctors hoped a mis-matched donor would be close enough - but the procedure didn't work

Angela said: "She just got on with her life and, when she was told she'd have to have a bone marrow transplant, she decided to campaign.

"But Johanna's campaign was never about Johanna. The Trust get 16,000 new patient requests a year. We both realized that she could do something to make a change."

Angela started working for the Trust as a volunteer, with Johanna working on publicity.

The pair were introduced to Broadcasting Business media trainer Bill McFarlan, who explained how to make the biggest impact

Angela recalled: "He told her, 'This will be uncomfortable but, to grasp attention, you'll have to say: "Please help, I'm going to die". You can't skirt about it.'"

Johanna suggested a fundraising ball. Her Scottish Daisy Ball brainchild marked its 10th anniversary on November 22. Family friend and goalie coach Jim Stewart also introduced Johanna to other football heroes, including Ally McCoist, Walter Smith, Barry Ferguson and Bobby Williamson.

Angela recalled: "Johanna said, 'I don't want people feeling sorry for me or helping because they think I'm a poor wee soul.' "I told her, 'It's all about attitude. If you give people the facts but don't act like a poor wee soul, they won't treat you like a poor wee soul.

"If you act like someone who's gutsy - but the truth is you're going to die if you don't find a transplant - they'll respect that.

"That's just what Johanna did. She never played the victim."

MORE celebrity support came from Scottish Hollywood star Dougray Scott and pop idol Robbie Williams.

Scott was put in touch with Johanna when he was doing research for his leukaemia sufferer character in the film Ripley's Game.

Then, when Williams was coming to Glasgow to perform, Angela and her Anthony Nolan Trust colleagues thought it would be good for Johanna to meet him.

Angela said: "When we met Robbie, it was comical.

"He was expecting a sick, bald child and when we walked into the room he said, 'What's going on?' He thought we were at it.

"When we explained the situation, he was in tears and wanted to help.

"He struck up a friendship with Johanna. He used to phone the house and once left a message on the answer machine.

"It was left on for about two years because the kids used to bring pals round and say, 'Listen to this'.

"Then I accidentally deleted it."

In 2002, Angela switched from being avolunteer to an employee of the Anthony Nolan Trust.

She now works with families who want to run clinics to boost the register.

She said: "I have to explain to people that they can't join the register just for one person.

"But it helps them to know they're doing something. It gives them some control back.

"People used to say to me when I ran clinics as a volunteer, 'Have you found a donor for Johanna today?' "But that's not what it was about, it was to increase the register. If the register doesn't increase, people will not find donors.

"People fall off the register for all sorts of reasons - age, illness or whatever.

"We also have to target - which Johanna did with the sporting and pop stars - young fit males.

"There are fewer registered but they're better donors as they're less likely to get anaemia and don't get pregnant, so they're more available.

"People ask me all the time, 'How much money have you raised over the years?' "But I'm not here to feed my ego. My aim is, 'How many donors can I get tomorrow?'"

For details, go to www.anthony nolan.org.uk or contact the fundraising office on 01506 655361.

'I feel so privileged to have this job, it's wonderful knowing you make a difference'

CAPTION(S):

JOHANNA'S ANGEL: Pop star Robbie Williams was a supporter and friend; OH BOY: Johanna roped in actor Dougray Scott and footballers Ally McCoist and Barry Ferguson; HAPPY DAYS: Johanna looking fit and healthy on holiday PICTURE: PHIL DYE
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Publication:Daily Record (Glasgow, Scotland)
Date:Dec 4, 2008
Words:1092
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