Breaking the silence

Jo Milne had lived a whole life, severely hearing impaired from birth. Just before she turned thirty, Jo was diagnosed with Usher Syndrome, a rare genetic and progressive condition that will slowly leave her deaf and blind.

In 2014, she made the life-changing decision to undergo major surgery. She was given cochlear implants to help her hear better. Every moment of Jo’s days since the surgery has become a journey of discovery.

More than 12 million people watched the poignant video of 39-year-old Jo Milne’s cochlear implants being turned on.

Breaking the Silence is a remarkable and beautifully written memoir that will serve as an inspiration to all who read it. Varying, heartbreaking and heartwarming, it is the incredibly uplifting life story of a woman who refused to give up hope and always lives life with a smile on her face.

Watch Jo hear for the first time here:


Michael John shares his experiences and sorrow with a lot of humour in his charming writing style – open and honest – which makes him vulnerable for the world. Michael John shares his life story, his life with Usher Syndrome and his faith in God from his heart. The reader is transformed into his world of semidarkness and limited hearing. Perseverance’ is what life is about. South-Africa.

A silent death

‘A silent death’ is situated in the south of Spain and it is the newest thriller of the globally best-selling author of The Lewis Trilogy, Cast Iron and Ill Keep You Safe.

Spain, 2020. When expat and fugitive Jack Cleland sees his girl-friend die, shot in a chase in which officer Cristina Sanchez Pradell is involved, he promises to take vengeance. Cristinas aunt Ana has been deafblind all her life: she has the rare disorder called Usher Syndrome. Ana is the centre of Cristinas world – and that of Clelands cruel plan.

Usher syndrome & Pumpkin Day

Agie used to be a man. Now she has opened her heart for someone who wants to accept her as she is. However, her fate has other plans and Agie must fight for her love in the most challenging and unexpected way.

This short novel, Usher Syndrome, contains themes such as love, friendship, treason, self-identity, gender and even ultramodern gene therapy.

In Pumpkin mystery Agie tries to solve a mysterious disappearance of a gigantic pumpkin in a cave below Slown City. In the meantime, a lonely, rich man named Jake has to choose between courage and prejudice. A lost notebook brings the lives of these two people together.

Usher Syndrome’ was performed on the stage of the London Barons Court Theatre in 2010.

Shine Brighter

‘Shine brighter’ is a book about handicap and diversity and it was written with the purpose to bring Usher Syndrome to the attention of people and to collect money for Usher Kids Australia.

In the new children’s book ‘Shine brighter’ written by Julianne Schmid, the two central figures – a star and a moon – function as symbols to teach people something about Usher Syndrome and to inspire the confidence of children who are confronted with loss of hearing and eyesight.

‘Shine brighter’ was inspired by Julianne’s own experience as mother of two young boys suffering from Usher Syndrome and the journey they have made as a family.

Julianne: “Small star represents the light that is reflected in all children. The moon is a reassuring voice for the small star that sees and hears the world in a different way.”

Walk in my shoes

‘Walk in my shoes’ is a unique collection of 28 stories of people who lose not one but two senses, being hearing and eyesight.

Instead of giving up, these people discover and embrace their inner power to conquer the major obstacles and setbacks in their own search for acceptance, equality and respect in society. Even the simplest daily activities that people regard as being self-evident, such as travelling by public transport and cooking, can be huge challenges. Still every unique story shows that most people manage to adjust themselves every time again and take up and conquer the daily challenges.

Not fade away

The 34 years old Rebecca Alexander is psychotherapist, spinning instructor and volunteer. She is almost blind and seriously hard of hearing because of Usher Syndrome. ‘Not fade away’ is a deeply touching exploration of the obstacles we all come across: physically, psychologically and philosophically. Rebecca describes her journey starting from a teenager who tries to hide her handicaps to a woman who can see the world as it is. Although Rebecca is living in an ever darkening world, this does not prevent her from living with joy and enthusiasm.

This book will be filmed featuring Emily Blunt in the leading part. The release date is not known yet.

The enemy comes from aside


‘De vijand komt van opzij’ is the second novel by Jan de Kort (1951). This novel tells the story of André. André is hard of hearing and is slowly getting blind, which is a well-known situation for the author. Although some facts about the life of the author are mentioned in the novel, the rest of the story is entirely fictitious. In ‘The vijand komt van opzij’ Kirsten tells the story of her friend, in whose hectic life things always go differently than expected. This is highly recognizable and in that sense ‘The vijand komt van opzij’ is a page turner according to a co-reader.

The secret of the guide dog


Sofie loves Bo. Her father’s guide dog is the sweetest dog of the whole world.
But then daddy starts going to work by cab and he does no longer need Bo. She has to go.
Sofie determines that this will not happen. Bo has to stay!
The decides to hide Bo. That is the best solution, isn’t it?

Annemarie Jongbloed is text writer and author of children’s books. Het geheim van de hulphond’ is about a child with a deafblind father and it is based on experiences in her family.

She writes columns about living with a partner suffering from Usher for the Usher Syndrome Foundation.


Beyond the Muted Darkness


The photo book Beyond the muted darknesswas launched in Pakhuis de Zwijger on 31 August 2017. This book contains photographs of forty people suffering from Usher Syndrome taken by forty photographers. Beyond the muted darkness shows’ positive and strong pictures of the people suffering from Usher Syndrome. Each photo is accompanied by a short story of both the photographer and the person on the photo.

Photo book ‘Beyond the muted darkness’ was established by initiator and publisher, Marco Groenewegen. Forty top photographers, including Linelle Deunk, Koos Breukel, Reinier Gerritsen, Julie Vielvoije and many others, cooperated in making this book. Humberto Tan had his photograph taken by Sacha de Boer and wrote a foreword.