Magic of the Fairy Box for sick kids

When a family is affected by cancer, it is a life-altering experience and no case is ever the same. For Dundee woman Rosie Butler it led to the foundation of Fairy Box — a charity that has touched the lives of children and their families across Scotland

Rosie Butler.

By Jennifer Cosgrove
Published in the Courier : 21.12.11
Published online : 26.12.11 @ 09.18am

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"After a diagnosis of cancer, the world looks the same, but it is not," says Rosie. "Your perception of the world is completely different and you begin to meet people that you would never normally meet — oncologists, haematologists, nurses, doctors — and get into the world of hospital treatment."

Rosie's daughter Aimee was diagnosed with acute lymphoblastic leukaemia in 2000 at the age of five. A cancer of the white blood cells, it is one of the most common childhood forms of the disease.

Over a gruelling 10-year-period, Aimee fought and beat cancer three times, undergoing intensive treatment at Dundee's Ninewells Hospital, Edinburgh's Royal Hospital for Sick Children and Glasgow's Yorkhill as well as having two bone marrow transplants.

Along with Rosie's partner and her son — then aged 11 — the family devoted their time and energy to ensure Aimee had the support to overcome the many hurdles that would arise on her road to recovery.

"As a family, we decided we would deal with it — and that was very much how it was," she explains. "Looking back, the first change is shock: how do you deal with it?

"The next question you ask is 'are they going to die?'. That's what you have to deal with first of all, because that's the biggest fear. It is very hard to sit beside a child knowing that you can't make them better, because it has to run its course — whatever that may be.

"You don't have the expertise in the medical sense and you have probably never had anything more serious to deal with than a bad reaction to a vaccine or a bad sniffle."

Aimee started chemotherapy the day she was diagnosed and Rosie says she was "blessed" with a very capable and informed team, with whom her daughter developed a lasting relationship to this day.

Rosie explains that while you ultimately concentrate on the long-term goal of getting through the treatment, sometimes it isn't even a case of taking things day by day — but from one moment to the next.

"One of the things I recognised was children need something that is theirs and that can take them outside, for a little time, of the stressful situation which they don't understand."

Rosie quickly discovered one child's experience is not necessarily another's. Although medical knowledge is changing, physiologically, every person's body is different, and their mental and emotional energy is different, too.

Aimee's leukaemia was to prove difficult to treat and after two-and-a half years of treatment and almost a year of recovery, she unexpectedly relapsed at the beginning of 2004 aged eight, leaving the family devastated.

Instead of being taken back to hospital in Dundee, she was transferred to Edinburgh, which meant a lot of travelling and split the family for several months. Following aggressive treatment, it was advised that Aimee needed to have a bone marrow transplant.

Sadly, her brother was not a match — genetically siblings only have a one in four chance of being a match — but more serious than that, it was discovered Aimee's tissue type was so rare, she had a one in a million chance of finding a donor. So a desperate search began of 50 bone marrow donor banks across the globe. Normally it's reckoned the chances of finding a match are about one in 20,000.

"So, being faced with this prospect and also the prospect of a life-threatening procedure, that's where fairies came in," Rosie goes on.

"As a little girl, I remember going to the McManus Galleries with my father when part of it was still a library. As a family, we were always great readers. My mum was into ancient history, while my dad loved anything to do with aeroplanes.

"I, on the other hand, liked fairies and I can distinctly remember coming in to the McManus and picking up The Green Fairy Book. It is part of a series of twelve books called The Rainbow Fairy Books, by Alan Lang that includes fairy tales from around the world.

"It contained beautiful illustrations and I now have my own copy of the book in a hardback version and I have seven volumes out of the twelve.

"I suppose like most girls, you read books like that and then, when you have children, you share it again with them — and it took on a very different dimension when Aimee was ill."