“Wilona finds out that Victor is a very special and unique friend. Victor is born with Cowden syndrome. Victor tells here why he has such a big head. Why he sometimes acts a bit strange. Why he skips school so often… . And Victor discovers that he has a wonderful girlfriend that helps him and supports him in everything which entails Cowdens”
I wrote this book to explain to children, in an easy way, what Cowden Syndrome is, where it comes from and what possible symptoms can be. I also want to show the social emotional impact of this syndrome and the rarity of it.
It is important to know that this book gives a list of possible symptoms in a language that is understandable for kids. Not all Cowden patients will have all these symptoms.
I hope that by writing this book I can create a tool for many parents and/or caretakers to explain Cowden more easily. That it may be a help in answering possible questions and talking about problems of young patients with their friends or brothers and sisters. May this book be publicity for this rare and unknown syndrome.
At last I would like to give some explanation on the characters Victor and Wilona. I picked these names because of their meaning. Victor is a name that is common in many languages, always with the same meaning: “Victory”. It symbolises all victories a Cowden patient faces in his life long battle against Cowden. A lifelong battle indeed, it is a battle that can never be fully won, because this disease can simply not be cured. But from small victories they can hopefully find the strength to face the path that lays ahead. Just like knights fought in the name of their country ages ago. That is why Victor is pictured as a knight on the front.
The name Wilona means “Full of hope” because as a mother of a child with Cowden I can only look to the future filled with hope. Full of hope that my son conquers every battle, full of hope that he will never feel an outsider, full of hope that one day they will find a way to cure this gen-deficit.
Foremost, I would like to thank Anneke of Saam publishing. She helped me publish this book. It is not so obvious to get a publisher willing to publish a rare story for a limited amount of people. She also gave me wonderful guidance in this process and had an incredible amount of patience. She was a great help in putting up the website.
A big thank you to the wonderful An De Cuyper, who made this book colourful and clear. A story comes to life with fun and happy drawings.
It is fantastic that An and Anneke wanted to do this for someone they don’t know! Someone who doesn’t know you and is so committed to help you fulfil your dream, makes one’s heart warm…
Thank you John, who was willing to translate this book in French. He is also a person whom I’ve never met before, but gave it’s all for this project. It is wonderful to see that there are people out there who commit themselves selflessly into helping others.
Much gratitude to Moniek, who introduced me to Anneke and John. I would like to thank her for her unwavering commitment to the “Dutch patient days” and the facebook group she brought to life called (“Ons Leven Met Cowden Syndroom”). It is not that obvious… especially when your daily life is a burden sometimes because it is always about your illness.
I would like to thank Leen and An, two of my best friends who I’ve known since College.
Leen helped me translate this story into English. It is not easy to translate emotions in a way you want them to come across. But she did a great job.
An, on her turn, corrected all the last obstinate flaws. Thank you ladies!
Lots of thanks to all others who helped me in any way to make this book. Another special thank you to Ilse Van de Weyer.
To my husband and our big brother, thank you for being a support in the development of our loving youngest. It is not always easy but sooooooo worth it! Thank you my loved ones, I love you with all my heart. And let us not forget my little special boy. If he hadn’t been here, none of this would have been realised. Thank you for being part of our lives…
Lastly I want to thank everyone who has been there for us in the past years. For their support, understanding, kind words and encouraging pad on the back. You might not realise it, but is not so natural to others. The wall we face every day seems less high because of you. Realising that there are people who try to understand and show support, for a not so average child and life, warms my heart!
Title: Victor has Cowden
Text: Freya Vissers
Illustrations: An De Cuyper
Translation: Leen Verachtert
Publisher: SAAM Uitgeverij
The book counts 40 pages
ISBN: 978-94-92261-10-6
Price:€14,95
Excluding shipping costs.
Orders for Belgium ; use the form below. You then only pay domestic shipping costs
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