If you become both deaf and blind.
This unique documentary ‘The small world of Machteld Cossee’ has now been provided with English subtitling. This documentary was already shown at the Dutch Film Festival in Utrecht on Wednesday 1 October 2014 and had its première on television at NPO2 broadcast by the VARA on 9 February 2015.
Lisa Blom and documentary maker Hetty Nietsch followed the life of Machteld Cossee for five years. They stayed at the home of Machteld and her family and so documented intimate moments in their lives.
How do you live your life if you know that one day your world will be quiet and dark? The central figure in the documentary ‘The small world of Machteld Cossee’ knows that she cannot escape her fate. Still, she tries to live a normal life as long as possible. This results in touching moments as well as frustrations and rows and moments of fear for the future.
On her seventeenth birthday Machteld is told that she suffers from Usher Syndrome. At that time she already is hard of hearing, but she will become blind as well. This message is a great blow to the family. Still it is rarely mentioned after this. Her father is a general practitioner and he finds it hard to accept that there is nothing he can do to help his daughter.
Machteld herself tries to build up an as normal as possible family life with her boyfriend and not to give in to her fear. Machteld: ‘When I think of it, it literally seizes me by the throat. So then I think about what we will have for diner that evening.’
In the film we see what Machteld sees and hears, how she scans her surroundings, how she slowly becomes an outsider in her own life. How she fights with the desire to give a meaning to her own life. Machteld’s is small already. There always is that fear: when will my hearing and my last bit of eyesight definitely disappear, making my world as small as it can get?
“Not pitiful, but touching”
Jean-Pierre Geelen, reviewer of the Volkskrant
Hans Beerekamp, reviewer NRC Handelsblad
After having watched this documentary, you can make a voluntary donation. With your donation we can stimulate hopeful research into stopping the process of becoming both deaf and blind as a result of Usher Syndrome.
#stopUSH and make our dream come true!
Or donate by means of a bank transfer
NL 85 RABO 0362.3905.25
BIC: RABO NL2U
in the name of Usher Syndrome Foundation
Do you want to read more?
After the première of the documentary, Machteld gave some interviews and she held an impressive ´TedTalk in October 2015.