I thought that June 2010 will be a great month, because as German guy I was really looking forward to the World Cup. But instead I’ll always remember June 2010 for a different reason: Our daughter Stella got diagnosed with Neurofibromatose Type 1.
Our family has no history of this disorder and we had never heard about neurofibromatosis. At first we had no idea about the symptoms and how it can impact the life of our daughter. It was a really tough situation for us. I had just started a new challenging job for a company which produces synthetic genes and my daughter was diagnosed with a genetic disorder; I thought how can this be?
We had so many questions like: How could Stella get NF1? Why is our family affected? Is that fair? For most of these kind of questions there is no answer, but I`m pretty sure that most people who are affected with NF have the same questions at least in the beginning.
Our daughter Stella has a lot of café-au-lait-spots and three cutaneous neurofibromas on her left shoulder. Stella is an extreme active kid and my wife really has a full-time job with her. Anyhow, since we heard of Stella’s disorder we love her even more and we enjoy every second with her. She’s so lovely and we hope that she will cope with the disease. We hope that with a strong personality she will handle the disease, even if her life is probably more challenging than that of people who are unaffected.
It took us a while till we could talk about the disorder and it is still hard to accept her diagnosis sometimes. Nevertheless, we think the best thing we can do is to start the fight against neurofibromatosis. Therefore we founded the German non-profit organization “Nothing is Forever – Neurofbibromatose durch Forschung besiegen” in January 2011 (www.nothing-is-forever.de). Since that time we spent nearly all our leisure time working for to advance NF research and we are optimistic that there will be a treatment for neurofibromatosis. Additionally I took a two month parental leave to push the project.
With the Nothing is Forever we will push the research in the area of neurofibromatosis and we will provide patients with current information. At the moment we are looking for a famous patron for our organization. Since February we have collected nearly $20,000 for the battle against neurofibromatosis and we hope that that is just the beginning. We are sure there is a cure for NF!
Josef Kammermeier
1. Chairman “Nothing is Forever”
