Like the falling leaves in September each year, many Barth parents visit their sons’ teachers and peers to explain what it is like to live with Barth Syndrome. BSF Board Member, Florence Mannes, is one of those parents. However, as her son, Raphaël, got older, he expressed interest in explaining Barth syndrome himself to his peers, but he wanted some support. Around the same time, some French families approached Florence, asking to help them explain Barth syndrome to family members, care takers, and others. “That’s how the idea of the booklet was born,” Florence explained. She went to work drafting the booklet, which ultimately published in two volumes: “Barth Syndrome: A Little Book for Children” and “Barth Syndrome: A Little Book for Teenagers.”
Early in the process, Florence reached out to longtime friend, Zoé Viot, an accomplished illustrator. “I was raised with Zoé; all of her drawings are part of my childhood. She is the one who created our wedding invitation,” said, Florence. “She knows what living with a special needs child means, and I was convinced she would be able to create a booklet both informative and fun…she did more than that, and the result was better than we expected.”
Zoé always loved to draw and went on to train in graphic arts. “At the end of my studies, I spent two years in communication agencies as an artistic director, but I finally chose to become an illustrator to have more freedom; And it's been going on for 20 years!” Zoé said of her career in the arts.
Zoé’s 18-year-old daughter has multiple disabilities including autism. Zoe used her talents to share her family’s daily life in an illustrated blog to “de-dramatize” the life of a caregiver. “I like to use slightly caustic humor in order to distance our story from those of pity or inspiration that generally accompany conversations around disability,” Zoé said. She first learned about Barth syndrome from Florence, whose son was born a few years after her daughter.
When Florence approached Zoé to illustrate the book, she immediately agreed. “Illustrations help capture the audience's attention and get the message across more effectively than words alone, especially in today's world where you only have a few seconds to hold the reader's or viewer's attention,” Zoé explained.
The booklets explain Barth syndrome in an accessible and engaging format. They also open the conversation around access and inclusion for people with disabilities, moving away from the common narrative of “pity” and “less than” that stigmatizes disability. Both booklets are available as free downloadable PDFs on the BSF website at www.barthsyndrome.org. Thank you to Florence and Zoé for creating these valuable resources!
You can find out more about Zoé's work via her website at: www.zoe-illustratrice.com