This picture book was written for young children with the intention of allowing readers to observe and experience multiple sclerosis through the eyes of a child. Multiple Sclerosis (multiple sclerosis world day was celebrated this past May 30th) is a chronic demyelinating disease of the central nervous system that mainly affects young adults (between 20 and 40 years of age) but can also affect children. Although multiple sclerosis in children is similar to that in adults, several clinical features as well as treatment approaches and social impact, may differ between children and adults.

"The Unicorn and the Butterfly (Who Really Isn't a Butterfly) The Bunny Adventures in the MS World" the book’s title, recently released and available on amazon.com., aimed at children with multiple sclerosis and their families. It was designed and written by four hands Dr. Antonia Ceccarelli, clinical research neurologist at a medical center in Abu Dhabi in the United Arab Emirates and her friend Eneida P.Alcalde writer at Harvard University and member of the prestigious Macondo Writers' Workshop, with the potential not to explain the pathology, but to observe it with the eyes of a child.

How the idea was born

The idea originated from Antonia’s medical experience working with multiple sclerosis patients and researching about multiple sclerosis. While there is plenty of information available on multiple sclerosis for the general public, Antonia noticed the need for a story featuring a young character that children can relate to. “At the beginning of my medical career, I focused on caring of pediatric multiple sclerosis," Dr. Ceccarelli shared - “I also recently became a mother and this brought me closer once again to the world of children. As a mother, I rediscovered firsthand the power of stories to provide comfort and support for little readers as well as inspiration.” Antonia reached out to Eneida, a published creative writer to work on the story. Together, Antonia and Eneida brainstormed the characters and plot for the book.

The Unicorn and the Butterfly (Who Really Isn't a Butterfly) is a story initially designed for children with multiple sclerosis, but "a pediatrician colleague of mine, who read the book - - adds Dr. Ceccarelli - that “a pediatrician who read the book suggested that since the story is centered on a single symptom, the message of the book may be extended and applied to other pediatric diseases that share similar symptoms.” 

The first book in a series

It is the first book of a small series entitled ""Beni the Bunny's Adventures in the MS world"- the authors said - which tells the story of the Beni rabbit cub through some symptoms of the disease. The book gently and delicately addresses Beni's fear of the symptoms of the disease that suddenly interrupt his life as a baby rabbit, and he learns to face his fears with the help of friends he meets in the forest and the love of her. his family.

"The disabling symptom that scares the little rabbit - - she adds . In other words, the story uses the power of imagination to obtain consolation for its young protagonist and young readers. In the book, the role of medical professionals and friends and family, as well as the assistance they provide, is also very important. Indeed, the book’s title represents two important characters Beni meets in the story, Spark the Unicorn and Fiona the Butterfly (who really isn’t a butterfly). It’s a whimsical title featuring two special characters that become Beni’s friends. Spark and Fiona are metaphors for the doctors, nurses, and medical staff that treat multiple sclerosis patients and help them cope with their condition.

What are your plans for this book in the future? The book is written in English. Are you planning to translate the book into other languages? 

The Unicorn and the Butterfly (Who Really Isn’t a Butterfly) is the first book in a series of four picture books. The other three books will focus on other symptoms and will have Beni meet new friends who will show him how to cope with the disease as he undergoes his personal multiple sclerosis journey. If the children’s book does well and there is demand, the authors are interested in eventually translating the book into other languages including Italian and Spanish.

Dr. Ceccarelli, you are a clinical researcher in a medical facility in Abu Dhabi. Tell us more about your work and the goals you are aiming to reach.

Yes, I am a dually trained neurologist-clinical researcher and I work in a medical facility in Abu Dhabi. My research investigates the pathogenetic mechanisms underlying neurological diseases, especially multiple sclerosis, using multimodal advanced magnetic resonance imaging techniques. My work combines a unique blend of clinical and research skills that I have acquired and developed during years of rigorous and comprehensive training in the most prestigious neurological research centers and clinics around the world.

What is the current direction of neurological research nowadays?

Several new discoveries have been made recently both in the diagnosis and treatment of neurological diseases. For example, when I started dealing with multiple sclerosis, we only had one type of treatment that could limit the progression of the disease. To date, we have numerous disease modifying therapies we can rely on. Furthermore, we have unveiled many previously-unknown clinical and pathogenetic aspects of the disease. In the past, neurological research was mainly either clinical, observational, and/or epidemiological, but today we have several research techniques available that allow us to “look inside our brains” to observe what happens in brain lesion and in normal-appearing brain tissue, just to give some examples. We can also investigate the genetic component underlying the development of diseases and how the interaction between the environment and us can affect the development of neurological diseases.

We are all butterflies, aren’t we?

Yes we are. Fiona is a metaphor as are all of the characters in the book. She looks like a butterfly but she is actually much more than a butterfly. She is a fairy and a symbol of what we all have the potential to become but which may not be immediately apparent to ourselves. She reflects my love for the critical roles doctors and nurses play in patients treatment and care. These are magical roles that are able to “see” and “imagine” what is occurring within patients that not everybody can see or understand. Just like a child’s imagination, medical professionals and researchers are a bit magical—like a unicorn and a fairy that hides as a butterfly. In the story, it is not obvious at first that Fiona is capable of fantastic things such as helping and also protecting Beni. To quote my daughter: “Mom, I understand what you and Dad do! You are a little magical! You have read so many books. And thanks to those books, Dad, through the sounds of the heart, gives medicine and fights many diseases with this medicine to make sure they go away. Mom, you are magical as well!” We hope to reach a reality in which the disease is only imagined!

Working on this children’s book has been a “new, unique, and challenging” experience for the two authors. The picture book conveys a message of hope to young children and their families. Good luck! We cannot wait to read the other books of the series, following the adventures of Beni, a young yet magnificent little Bunny.

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