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Thanks to Johan Basson who was responsible for the translation. My name is Marelie Dormehl. I am 15 years old and two years older than my sister Wilmien. My sister was diagnosed with Prader-Willi syndrome at age five. Everything started changing when the diagnosis was made. It was a major adjustment for everyone at home. I could not eat what and when I wanted to. We always had to take Wilmien into consideration. She tends to infuriate and irritate me, but we remain sisters. Sometimes we fight like cats and dogs, but afterwards we play together. Over the last year things changed a lot. I went to high school and became a hostel dweller, and am only at home over weekends and during holidays. There are often occasions that I don’t understand her. I cannot understand how she can spend hours sorting cards or playing games on her tablet. I try to involve her when I have outside activities. We also started a vegetable garden in order to have fresh vegetables for the house. |
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It is important to know how to handle someone with Prader-Willi syndrome. They are always hungry and get angry easily. When she gets agitated, I speak to her nicely or try to divert her attention away from the source of her agitation. It takes a strong and sound family to handle someone like my sister. One has to make them understand that, even if they are hungry, it will not help to keep on eating. I feel that to lock everything will only infuriate them. So far it has not been necessary to lock our cupboards and fridges and so far it works well. Wilmien has recently gone on a diet and lost 5kg. She and mummy are on a new eating plan together in order for both to lose weight. It is easier for Wilmien if someone supports and joins her. They are both losing weight and keep each other motivated. Mummy and Wilmien are still on the eating plan, but handle it on a day by day basis. It is not easy for Wilmien to persevere and we are proud of her. It she puts her mind to something, she goes for it. She is very stubborn and follows her own head, but that is who she is. I could hardly believe that my sister would go on a diet, but she did. She persevered and has lost substantial weight. |
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My sister has needle working classes on Fridays. It allows her to get out of the house and to learn new skills. She has already made her own shirt and trousers, as well as a skirt for grandma, pair of short pants for me and is busy with a blouse for mummy. It is not healthy to sit in the house the whole day. Therefore she occasionally rides a horse. She receives horse riding lessons from a lady that comes to my dad and mum’s work every week. Now that the summer heat has arrived, she enjoys swimming, which is also good exercise. Mum and dad bought us an inflatable swimming pool last December for our swimming. Wilmien is coping well with the swimming. She swims under water with her goggles and does not even realise that she is exercising while she is swimming. Even though my sister makes me desperate sometimes, I will always love her. My wish for my sister is that she must be happy and that we can help her to be motivated to tackle anything. |
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