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: https://www.youtube.com/watch?v=IyDdVJ81Ixs

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Two generations on the big screen

Living with Usher and at the same time wanting to be a role model for others

On the International Usher Awareness Day 2021, the documentary Stilte in de Nacht [Silence in the night] had its premiere on television and after this it was shown through YouTube. This made the documentary accessible for the general public.
Lisanne van Spronsen and Milou op ten Berg, the makers of this documentary, followed Joyce de Ruiter and Nikki de Punder with their cameras for a few months.
Two generations with Usher. Both strong women who hold a positive view of life, who know what they want and who act as role models for their own generations as well. 

Sandra Vijverberg talked with both ladies to hear how they experienced their participation in this documentary.

More than a school project 
Joyce was in particular positively surprised by the professional way of working and passion of Lisanne and Milou and that it turned out to be a lot more than just a ‘school project’. Professional photos were made for the promotion and film poster and Lisanne and Milou started a crowd funding action, which enabled them to make a very nice donation to the Stichting Ushersyndroom (Dutch Usher Syndrome Foundation). The ladies did not limit themselves to making the documentary, but they also made various podcasts for Stilte in de Nacht.
As speaker and author, Joyce is used to sharing her story on stage and in her book. Accepting the presence of the camera near her made her feel vulnerable, but at the same time it was a nice thing to do.
Nikki really liked being part of it. She tells us that she does not talk a lot about Usher and about what it means to her. However, especially the approach of Lisanne and Milou made things feel very safe. “Because they managed to make me feel so comfortable, I dared to honestly answer all questions.”

On the big screen 
The question of how they felt about seeing themselves on the big screen and later on television makes Joyce laugh out loud. Terrible!”, she laughs. It really is very strange to realise that a lot of people who are completely unknown to you know about you.” Nikki thought it was very special. “It always is strange to look at yourself, in particular on a film screen of 50×25 metres!” The documentary had already been shown to the ladies when it was nearly finished, later at  the premiere in the theatre and then again recently on television. Nikki continues: “We watched the television premiere together at the home of Lisanne’s parents. My parents had also come, Joyce was present with her family and, of course, Milou was there as well. This made it feel like a kind of reunion.”

Role model for fellow-sufferers 
The ladies received really a lot of reactions to the documentary. Very nice and positive reactions, but Joyce also received a reaction from someone who has a person suffering from RP in her environment. Joyce: “She told me that his person has so much problems with this, that he or she finds it unbearable to live with the diagnosis. This was really heavy. On the other hand, it confirmed to me how important it is to have role models in fellow-sufferers. Role models who can inspire you, who can support you. Persons who inspire me personally give me a lot of strength every day again. Hopefully Nikki and I can also be that for our fellow-sufferers. To me understanding this is the best thing the documentary has brought me.”

In the spotlights 
Joyce tells us that, despite the fact that this also is a part of her work, it sometimes is quite difficult for her to always put herself in the spotlights again.
Trying to find the spotlights for the Usher Syndrome Foundation is something she does for the good cause: It gives me the confirmation and the strength that we, people suffering from Usher, have to keep shouting from the rooftops what the impact is of this disease and that more money is needed for treatment.”

Inspiring for others
Nikki received a lot of reactions through Insta from friends as well as from people unknown to her. Besides, the documentary resulted in a nice article about her in the newspaper (insert link). This article led to an invitation for the talk show ‘M’ of Margriet van de Linden (insert link) and she also visited Anky van Grunsven. This has resulted in a steady friendship.” She continues: “this is again one of the best things that participating in this documentary has brought me. Apart from this, a lot of people will by now understand why I sometimes cannot follow things, do not hear well or why I sometimes am a bit careful in the dark, for instance. The very best thing is, however, that there are people telling me that I inspire them. This never was my intention, but it certainly is very nice to hear.”

Silence in the night (Stilte in de Nacht)
The documentary Stilte in de Nacht can be watched with Dutch and English subtitling

Spanish film festival 
By now, it has become known that Stilte in de Nacht has been selected for the Spanish film festival Certamen Raras.” This special film festival is about rare diseases and health.

The jury will announce the best documentary on 15 November 2021. Also an audience prize will be presented for which can be voted from the Netherlands as well. Voting for Stilte in de Nacht can be done through via the button below. You can vote for Silence in the night via the button below.

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Read also:
Colour me blind

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Trailer Silence in the night

The documentary Silence in the night, made by Lisanne van Spronsen and Milou op ten Berg, is ready. The premiere has been postponed due to the COVID-9 measures.

The trailer can already be viewed, with subtitles.

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The world of Sander

As a result of Usher Syndrome, Sander Koomen’s world is shrinking in terms of hearing and sight loss. Sander still has big dreams and prefers to inspire others and set an example for his children.

KNGF (Royal Dutch Guide Dog Foundation) made an inspiring video of Sander and his guide dog Brigthy in collaboration with Eukanuba.

Unfortunately, this film is spoken in Dutch and does not have English subtitling.

Perseverance

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.

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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.

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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.

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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.

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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.