Victor Carnel (12) suffers from the rare Wolfram syndrome, a condition that develops diabetes, blindness, deafness and other neurological disturbances. There are only 30,000 known cases worldwide. The boy’s grandparents, who live in Geluveld, set up a number of campaigns, the proceeds of which will go to The Eye Hope Foundation, an organization that supports research into Wolfram’s syndrome.
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Andre Carnel and Mieke D’Hooghe from Geluveld are organizing an open garden day and a barbecue, the proceeds of which will go to That is a rare condition that Victor, the 12-year-old grandson of Andre and Mieke, is one of only 30,000 patients worldwide. Andre and Mieke are the grandparents of Victor, who lives with his dad, mom and 2 sisters in Porsgrunn in Northern Norway. Papa Lode is a civil engineer who obtained a doctorate in solar energy and went to work in Norway 14 years ago. “In November 2015, our son Victor, who was 6 years old at the time, was diagnosed with Wolfram’s syndrome or DIDMOAD (Diabetes Insipidus, Diabets Mellitus, Optical Atrophy), say Eline Vanden Bussche and Lode Carnel, the parents of Victor. “Only 1 in 500,000 people have this condition. It is a genetic disorder that slowly affects the nervous system. At a young age, it is characterized by type diabetes and deterioration of the optic nerve. Most people also develop hearing loss and diabetes insipidus at a later stage (with diabetes insipidus, patients lose too much fluid, Ed) Thanks to thorough clinical research into this condition, Wolfram patients today often live over 30 years of age. However, their life expectancy is drastically lower compared to healthy people. There is currently no treatment for this.” In 2016, Victor’s diagnosis was confirmed by genetic testing. “At the moment, Victor suffers from type 1 diabetic and is partially sighted. The doctors sent us home with the message that there is nothing that can be done about this, except to treat the symptoms once they appear, if treatment is possible at all.” In September 2016 Eline and Lode came into contact with a couple whose daughter also suffers from the same symptoms as Victor. “During our conversations about our children, we agreed that it is very difficult to accept that our lively and talented children will become completely dependent later on and that we, as parents, will probably have to say goodbye to them way too soon. We agreed that we cannot and will not just accept this fate!” The couples decided to fight for a solution together and set up the Eye Hope Foundation, as part of the King Baudouin Foundation. Our goal is to support research into a treatment for Wolfram syndrome. “We want to make the syndrome known and organize activities to financially support this research. Every day we work very hard to turn this negative experience into something positive. We have already visited several countries and talked to several researchers and other Wolfram patients. Because the syndrome is so rare, pharmaceutical companies are not interested in investing in research for a solution.” Wolfram’s syndrome is actually a hereditary condition. Each of us has 2 Wolfram genes. When a child inherits an abnormal Wolfram gene from the father and an abnormal Wolfram gene from the mother, the child will be diagnosed with Wolfram syndrome. In this situation, each parent carries one healthy copy of the Wolfram gene and one abnormal copy of the same gene. To support the research, Andre and Mieke, together with the Landelijke Gilde, are organizing an open garden day in their home on Saturday 26 and Sunday 27 June at 45 Menenstraat in Zonnebeke. Admission is 5 euros per person and the proceeds go to The Eye Hope Foundation. On June 4, a Barbecue à volonté will take place in the same garden. The proceeds of this will also go to The Eye Hope Foundation. You can join both in the afternoon at 12 noon and in the evening at 6 p.m. All applicable corona measures are applied. Registration can be done until June 26 by bank transfer of 25 euros per adult and 12 euros per child to account number BE34 0017 8386 8190, stating name, number of people and time of arrival. If you are unable to attend, but still wish to express your sympathy, donations will be gratefully accepted on BE10 0000 0000 0404 with reference 016/0630/00037 from the Kong Boudewijn Foundation. Gifts from 40 euros are tax deductible. More info via 0474/43.47.11 or 0472/48.25.75 or via www.eyehopefoundation.org. (CMW)
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