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
“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.”
Rosie (pictured below accepting a donation) says Aimee needed something that was going to take her through her difficult journey moment by moment.
“We started to read her fairy tales from The Green Fairy Book and we had people helping us who sent us a book of Modern Fairy Art, and the pictures were stunning.
“I got in touch with the author of the book to explain that my daughter was very ill at the moment and loved fairies, and did he think the artists in his book might send her a card? Within four days, I was papering the walls of her hospital room with fairy art. All she saw was fairies!”
As news of the girl with the fairy-themed room spread across the world thanks to the internet, bags of post started arriving from everywhere.
“This could take Aimee’s imagination to a magical world where children didn’t get sick, and fairies can make people better,” Rosie says.
The fairies helped Aimee pass some of her most difficult times. Having had her second diagnosis at the start of 2004 and completed her treatment by May, there was still no bone marrow donor. Then, out of the blue, one came up that was a 9/10 match.
Shortly after that, Aimee was in an isolation room on the children’s cancer ward in Glasgow’s Yorkhill and, for reasons of hygiene, Rosie had to battle to be allowed to decorate her daughter’s room with fairy art and figurines kindly donated by well-wishers.
“I knew that while the staff at the hospital were fighting on a cellular level, I was fighting on an emotional and spiritual level. I fought tooth and nail but I think it is fair to say it was conceded there was a benefit to Aimee.
“What we were creating for Aimee was an emotionally safe space where she didn’t have to be a little girl with leukaemia and where she could have her fairy world with her always.
“We told her this was a special place in the heart of the forest where you will go to get better and where your fairies will stay with you until you are ready to move to the next stage.”
Being split apart once more was not an option for Rosie’s family, and so they moved to Glasgow in the summer of 2004 to see through Aimee’s treatment. They returned to Dundee by Christmas and were doing well until October 2005, when Aimee relapsed once again.
To begin with, consultants gave the family a matter of weeks, and they took Aimee on holiday to Disneyland Paris, trying to fit in as much as possible. She remained on palliative treatment, but then in the new year of 2006 it was suggested they try for a second bone marrow transplant.
Aimee had the operation on her eleventh birthday, and Rosie says fairies were still very much her daughter’s lifeline, even though she was getting that bit older.
Now aged 16, Aimee is cancer-free and carrying on with her life. Still involved with the Fairy Box charity, her main passion is science particularly topics like neutrinos and the speed of light and she wants to be a cosmologist.
Fairy Box first started in 2005 and became a registered charity the following year. Its purpose is to help support ill children in hospital, their families, and the medical and nursing staff involved in their care.
The Fairy Box itself is a themed gift box which sits on the children’s wards and is filled with small gifts of books, toys, and games, so that parents, medical and nursing staff caring for ill children can have access to a gift to help dry the tears of a child who is feeling sad or distressed.
There are currently Fairy Boxes in Dundee, Aberdeen, Perth, Glasgow, Kirkcaldy, Orkney, Stirling and Edinburgh and it is the aim of the charity to provide a box on every children’s ward in Scotland. Its spread across Scotland has been helped by medical staff who have seen its success in one location, and wanted to see it in their hospital.
Like any charity, Fairy Box relies upon money donations or donations of new toys, books, games, etc., suitable for toddlers right up to older children and teenagers, and priced in the region of £5 to £10.
Rosie explains: “When Aimee was at Yorkhill, there were too many gifts more than she could play with and we forget that sometimes children just want to be children and be able to play normally.
“Aimee told me what they needed at the hospital was a Fairy Box something that contained toys and gifts that they could have when they were feeling fed up.
“She said, ‘Wouldn’t it be great, Mum, if every hospital in the world had a Fairy Box?’ I said let’s see how we get on with Scotland first!”
Inspired by the kindness and support shown to Aimee, Rosie started a campaign in 2005 together with some friends to collect new toys, receiving assistance from the local media.
She goes on: “It is beneficial to parents. You can hold a child’s hand and dry their tears, but what else can you do?
“For a parent who has gone through the trauma with a child, to see their tears stop and for them to be focused on something else because of Fairy Box takes a huge amount of stress from them.
“I have had hospital staff say that they were glad of the Fairy Box, because a frightened and distressed child needed something.”
Toys must be new, because there cannot be a risk of introducing infection in the hospital. The Fairy Box is not a toy box that children can play with then put back, and this is why the charity cannot accept second-hand donations.
Once a child has chosen an item from the Fairy Box, that toy belongs to them. It is not unusual for children to have multiple toys from the Fairy Box if they are undergoing a lengthy treatment and even brothers and sisters who are visiting sick siblings.
Rosie admits the charity began to see the grave effects of the credit crunch on last year’s accounts, however, things appear to be improving once more, perhaps because of a realisation by some that charity might not exist if donations are not forthcoming.
Fairy Box also makes a promise to people who donate that if there is a specific hospital they wish to have the toys or money, this will be honoured.
Rosie has seen a surge in Fairy Box support in Aberdeen and is close to making an announcement about a funding boost for the Edinburgh Fairy Box. In Dundee, the Rep Theatre has supported the Fairy Box appeal every year and is once again accepting donations of new packaged toys, books and games for children of all ages during the run of its Christmas show Cinderella. Donations should not be gift wrapped.
The charity is also always seeking volunteers willing to be a local contact for each Fairy Box to help keep it re-stocked and to assist fundraisers and supporters.
Rosie adds: “Where there is a Fairy Box, we have been able to change how children experience hospital treatment and that’s huge.”
For further information about Fairy Box and how to get involved, visit: www.fairybox.org, email: fairies@fairybox.org or contact 01382 225829.