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In the United States, about 10,000 children are diagnosed each year with cancer. Across the globe the number experiencing childhood cancer rises to 400,000. And, as the author Rebecca Smith points out, for “for every child that is diagnosed there are many more children whose lives are impacted—friends, siblings, children in the playground.” Cancer has a malicious ripple effect, one that is unlikely to leave most children unscathed, even if they are not directly and personally affected by it.
“When a child has cancer it is not only the child with cancer who is fearful,” Smith, a former teacher, says. “Friends, kids in the playground, passers by in the street might see a child without their hair and be scared and uncertain how to talk to that child. Do they ask about their illness? When kids are frightened they can often respond by being mean.”
But cancer is not a topic that children are often given the opportunity to discuss, although Smith, with the publication of her new book, Super Daisy (which publishes tomorrow) is out to change. The story is inspired by her real-life god-daughter who was diagnosed at the age of two with a rare form of childhood cancer, and it tells of a magical wig that transforms Daisy’s outlook on her own battle. While Daisy’s cheery and singular personality shines on each page of Super Daisy, the character herself is more of a universal avatar: “Daisy represents many children who find the most extraordinary inner strength whilst facing the injustice of childhood cancer.”
Just before the publication of Super Daisy, I spoke with Smith about what she hopes the book might accomplish.
Shortly after her 2nd birthday my Goddaughter, Daisy—also my daughter’s best friend—was diagnosed with Langerhans Cell Hystiocytosis, a rare form of cancer. Daisy had been seriously ill for months, unable to keep food down and failing to thrive. In those months she underwent countless tests for allergies and stomach complaints, but nothing added up.
I remember visiting the family on Halloween 2015. All our kids are friends—my two, Daisy, and her two older siblings. They played happily and Daisy was sparky and mischievous, but she was also thin, restless, exhausted, and desperately hungry. I remember her asking for porridge and snacks—by this point her diet was limited as allergens were being ruled out—but anything she ate she threw up. It makes me tearful to remember that evening. We all knew something was terribly wrong. Daisy’s mother, one of my closest friends, was beside herself. The next day they visited the consultant and Daisy’s mum asked, "when is the right moment to call an ambulance?” They admitted Daisy to Great Ormond Street Hospital, London that day.
Even once she was admitted, it took over a month to identify the cancer. Langerhans Cell Histiocytosis (LCH) is rare but there is a broader problem. A lack of awareness has often meant that doctors have failed to pick up and piece together early signs and symptoms of cancer in children. Recent campaigns in the UK have sought to change this and awareness is growing. Early diagnosis significantly influences outcomes.
In early December I received a message from Daisy’s mum with the news that Daisy had been diagnosed with cancer. She seemed extraordinarily composed, but she did not want to speak, only to share the devastating news. My own children were sleeping upstairs, the fire was glowing in the hearth, the Christmas tree glimmering in the corner, but in that moment everything seemed to turn black and white and hollow. I remember hearing my pulse in my ears. I felt utterly helpless and so far away.
That evening, unable to sleep, I began to write. I wanted to capture Daisy’s sparkle and mischief and shine a light on it. Most of all I wanted to write her a story that would help her and her family and let them know that they were not alone.
Being only two when she began chemotherapy, Daisy had fine, wispy hair. The truth is that she was less aware than many children of her hair loss. The thread of the story that most captures Daisy is not so much the hair loss but the heroism. This is something that strikes me about all children who face this deep injustice. They are so strong, so determined and optimistic. Children have so much to teach us all.
But for many children, losing their hair is very traumatic. It is a highly visible and inescapable sign of serious illness. In a society that places so much emphasis on the importance of identity, losing control of such a significant feature of that identity, particularly at a time when a child feels frightened or vulnerable, can be very traumatic. This is the reason that the Little Princess Trust was established.
The Little Princess Trust was set up by the parents of a little girl called Hannah Tarplee. In 2004 Hannah was diagnosed with a Wilms tumor. She was 4. Hannah loved her hair and losing it was very traumatic for her. Her parents, Wendy and Simon, searched high and low to find a wig for Hannah, during her treatment but it was really hard to find anything suitable. Synthetic wigs are cheap and readily available but they are hot and uncomfortable and, to be frank, make you look like you are in fancy dress. Real hair wigs are comfortable and beautiful, but they need to be made to fit the individual which is hugely expensive, making it impossible for most people to contemplate. When Hannah’s parents did find a wig, it had an enormously positive impact on Hannah. Tragically, Hannah’s story did not end like the book. Hannah passed away in 2005. Her parents decided that the most fitting tribute would be to establish a charity in memory of Hannah to provide free real hair wigs for children and young people.
The Little Princess Trust has provided over 15 000 real hair wigs to children and young people who have lost their hair in the UK and abroad, and raised £23 million in funding for childhood cancer research. It is very moving to spend time at the LPT HQ. Sacks of envelopes containing donated hair arrive every day and are sorted into length and color. Many of the donations come from children. I find it amazing to look at each of those precious ponytails, to imagine the story that has led each person to grow and donate their beautiful hair. I wonder how that child will feel when they look in the mirror and see themselves rather than the illness staring back
There are some pretty cool donations too! There are children who are wearing hair donated by Harry Styles and the Princess of Wales! I suppose that puts a whole new spin on the first page of the book – “she dreamed of cascading princess-like curls.”
What’s the best way for someone to go about donating their hair?I would recommend first visiting the Little Princess Trust website and clicking on the Donate Hair link at the top of the homepage. There you can find details of how to wash and cut your hair for donation as well as where to send it. [A good resource in the U.S. is Wigs for Kids.] There are also brilliant free fundraising resources and tips. It costs about £550 to make a wig, so fundraising is really very helpful indeed!!
I was initially surprised but have now come to expect that by the age of 8 most children have known someone with cancer, be it a friend, a family member, pet, neighbor. Children are very matter of fact, they like to tell you things but they can be frightened to ask questions. If they do not ask a question it does not mean that they do not have a question. If most 8 year old children have some connection with a person with cancer it is fair to say that most 8 year old children have questions about cancer but do not necessarily know how or when to ask them.
At one particular school visit I spoke with 50 children, aged 7-10. At the end the children filed out and said thank you. Three children into the line, a young boy stopped and said “my cousin had cancer”—from that point on, almost every child in the queue told me of someone they knew. Back in the classroom, the teacher picked up the conversation. All but two of the children in the class had been touched by cancer. “I had no idea,” she said.
You have children yourself—can you talk about how being a mother has made you think differently about your work and your writing?
Childhood is precious and must be protected, but it is also true that childhood is preparation for adulthood. Emotional intelligence does not arrive, it grows.
I try in my writing to create stories that support children’s growth, nurture their emotional awareness and encourage them to be enquiring about the world. I also try to speak to parents through my writing. Parents sharing a story with their children will have a different type of engagement and depth of understanding. I suppose the story is designed to provide the beginnings of a bridge between the interpretation of the child and the parent—and it works both ways. The shared experience of climbing into a story with our children is very valuable indeed. Stories provide a key to another world and a key that can unlock the real world on a path that you tread together.
What’s your hope for this book?I d like this book to make a real difference in a number of ways. First by touching the lives of those children who face the devastating injustice of childhood cancer and by supporting all children touched by cancer in whatever way. But beyond that I want this book to make a practical difference by raising awareness and funds to support research and development of kinder treatments, cures and prevention, because no child should have to face the injustice of childhood cancer. SuperDaisy is an avatar for this cause. I don t see her so much as a book but as a real-life superhero with a mission of her own.
Can you give us an update on the real Daisy?Last Christmas, shortly after her 7th birthday, she and my daughter were sugar-mice in the Christmas ballet show. Backstage I helped them into their tutus and styled their hair into buns. Daisy’s hair is thick but it is still fine, and I found myself being more careful with her bun than with any other. The music began and they tiptoed onto stage, snow falling, so delicate, so brave, so full of life. Five years since and she is well.
And Daisy loves SuperDaisy. She loves that she inspired SuperDaisy but she knows that she is not the only one. Recently a little girl posted a picture from her hospital bed. She had crossed out Daisy and written her name instead.
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