Avery: the little bird helping children understand genetic illness
A new illustrated children’s book aims to help parents and children start difficult conversations about their conditions.
“Most days I’m like the other birds. Other days though, I’m not. And I have to be very brave.”
Avery, a new children’s book produced through a collaboration between the University of Cambridge and Anglia Ruskin University, tells the story of a young bird who is born to be different from other birds.
The book is the brainchild of Professor Lucy Raymond, a rare disease expert at the University of Cambridge, who wanted to create something for children and parents to share about their illness and about taking part in research.
“Being born with a genetic disease can be confusing and frightening, not only for a child, but also their parents and siblings,” says Lucy. “We created this children’s book to help parents start what is often a difficult conversation with their child. It’s to help the children make sense of what’s happening to them. But it’s also to include siblings in what is happening to their brother or sister.”
To help realise her ambition, Lucy worked with children’s illustrator Marta Altes, whom she met through the Cambridge School of Art at Anglia Ruskin University, where Marta obtained her MA in Children’s Book Illustration. Marta had previously produced children’s book My Grandpa, which aims to help children understand old age and how the elderly are different from them.
“This was an amazing project to be involved with, but I felt a real pressure to get it right for the sake of the families who I hope will read the book,” says Marta.
Over the course of a year, Lucy and Marta worked together closely to develop the character of Avery and the story, bringing in situations that reflected the real experiences of families affected by these rare diseases.
“We felt that Avery couldn’t be a child, but should be an animal, and we decided not to say whether Avery is a boy or a girl: it’s up to the reader to decide,” says Marta. “That way, all children would be able to relate to the story, no matter who they were.
“We came up with the idea of making Avery a bird who couldn’t fly as well as its own brother or sister — there’s something poetic and very moving about this.”
In the story, we hear how Avery plays with friends, but sometimes struggles to keep up, and how sometimes their condition means they spends time in hospital.
There is a message of hope in the book, however, which reflects Lucy’s own work aimed at understanding the causes of genetic disease — and, ultimately, developing new treatments.
“There are lots of birds to help us. And there are lots of families like us. When we are together, we can find new ways to explore, and together, we can find new ways to soar.”
For her studies, Lucy recruits families from all over the UK. She is currently leading IMAGINE ID, a research project funded by the Medical Research Council, which looks at how a child’s DNA affects development, particularly in relation to learning disorders. The study wants to answer a question parents often ask when their child has a genetic condition: “So what does this mean for my child?”
“One of the reasons for producing the book was because there was a gap between the people who take part in our research — the children — and the people who give their consent, their parents,” says Lucy. “Of course, the children are too young to fully understand what’s happening, which is why their parents provide consent, but we hope this book will help them understand the amazing contribution they are making towards understanding these diseases.”
Lucy and Marta produced Avery after speaking to families taking part in IMAGINE ID. Each participating family now receives a copy of the book as a ‘thank you’ for taking part, and Lucy hopes to be able to offer the book to other families with a child affected by a genetic illness.
Avery is now available to order online and costs £8 within the UK and £10 outside of the UK (P&P included).