Bringing two worlds together
Anne Marleen (43) is speaking. She grew up with a father who suffered from a muscular disease. Which one, she prefers to leave open. That’s hers, too close and ultimately not important. It’s about what it means, the processes you go through – personally and as a family, the impact it had and continues to have. She is a donor to the Spierfonds and obtained her PhD on the question of how assistive technology can improve the quality of life of people with disabilities.
“I was not even a year old when my father fell. The muscle disease was already there, but from that moment on he was in a wheelchair. That has always been normal for me, I didn’t know him any differently. When I look back, I see the first ten years of my life as extremely cheerful, sunny, playful. Your mindset as a child is so different, you don’t see the difficulties that others see. That changed when I started puberty, I had so many emotions to express. In addition, necessary adjustments were made to the house, so that my father could continue to live comfortably at home. We had a lot of help from loving professionals, including from the Muscle Fund, but the procedures turned out to be a war of attrition. It was not only a mental burden for my parents, but also for me as a child.”
2023-11-13 14:26:21
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