Our story starts in November 2015, when our son Victor, 6 years old at the time, got diagnosed with Wolfram Syndrome or DIDMOAD (Diabetes Insipidus, Diabetes Mellitus, Optical Atrophy). Only 1 out of 500 000 people get this disease. It is a genetic degenerative disease which starts with diabetes mellitus and optical atrophy at an early age. Most people also develop hearing loss and diabetes insipidus later in life. Due to improvements in clinical care during the last years, many Wolfram patients now get older than 30 years however life is still reduced drastically.
In February 2016 genetic tests confirmed this diagnosis. Victor currently suffers from diabetes mellitus and is slowly turning blind. The doctors have sent us home, because there is nothing they can do but treating the symptoms once they start occurring (that is if treatment is possible).
Since september 2016 we got in touch with Stephan en Sophie. They have a daughter, Bertha, who also got diagnosed with Wolfram Syndrome. Bertha is now 10 years old and has the same symptoms as Victor.
As we talked about our children, we agreed that it is very difficult to accept that our bright, talented and lively children will later on become completely disabled and that we, as parents, will probably have to say goodbye to them much too soon. We also agreed that we could not and would not accept this fate! Therefore we decided to fight together for a cure with everything we have to the bitter end. Therefor Stephan and Sophie have joined the steering committee of the Eye Hope Foundation, we have founded as a part of the King Baudouin Foundation.
Our mission is to stimulate and support the research for treatments that can stop the progression of Wolfram Syndrome as well as treatments that will restore the damaged cells.
Every day we are working very hard to turn this very negative experience into something positive. We have traveled around the world to look for a cure and to visit other Wolfram syndrome parent associations.
Given the fact that Wolfram Syndrome is so rare, pharmaceutical companies are not interested in developing a treatment because there will be little return on investment.
That is why we would like to ask your help to raise a lot of money, so we can support scientific projects to find a cure for Bertha and Victor and for those who suffer from Wolfram Syndrome.
Help us to give them back their future!