We discovered Louise’s disease when she was 3 months old. We thought she had reflux problems, nothing too serious, but when the doctors told us about a genetic disease, a lifelong disability, our world fell apart. At the beginning it was very hard, Louise had a lot of stiffness, and cried a lot…we didn’t really know why. And the hardest thing for us was that the doctors didn’t know either… we felt lost, helpless.
With time, we got to know Louise’s behavior and reactions better and our daily life improved a lot. Louise has always been very well integrated in the family and by friends. The siblings’ friends are very receptive to getting to know her and trying to communicate with her.
Louise has been waiting for a place in a special school for 4 years. For the moment she is kept at home by her mother. She is doing rehabilitation at a private clinic and her mother repeats the movements at home. The gestures must be repeated and regular for it to work. In spite of everything we have a very pleasant life, Louise does not prevent us from doing things, sometimes we just have to adapt.
For the moment our hope lies in research…science is advancing and we are counting on that so that our daughter can one day walk and do things independently.
Louise is our happiness, our light and even without speaking she communicates and teaches us a lot.