My story begins in the 90s. Besides everything I had imagined and wanted for my life, I always wanted to become a mother. When I had my first child, this little miracle was the greatest gift for me. A year later it was clear that she was not well, but the cause was not easy to find. The diagnosis of a rare disease was for me like having the rug pulled out from under me. At that time, I had no internet where information and contacts could be found and I felt helpless and alone. I was pregnant again and those around me could not understand why I wanted to have "another" child. A child is a gift for me and the illness doesn't make it worse, just special.
In this situation, I began my search for other families who had to deal with this diagnosis. In the beginning, there were only a few families who were in contact with each other and supported each other. The Phosphatdiabetes e.V. emerged from this association of affected people and their relatives. I was there when it was founded and was active on the board from the beginning, first to help my daughter and not least myself.
At that time, I would not have believed that we would be able to achieve so much. It is not the merit of one individual, but together we have achieved a lot. Now there is much of what I so desperately needed back then.
I couldn't and can't change the fact that my daughter has this rare disease, but I can help people to cope better with it and walk part of the way with them.
You don't always see the meaning behind what happens to you straight away, but I firmly believe that there is. Living with hypophosphataemia has changed me. Sometimes it's the things we can't change that change us. Maybe I would never have met a lot of great people and not have this very special connection with my daughter.