Readers of this blog might have noticed that I am not getting a lot done in the last couple month. This has partly to do with the birth of my wonderful little daughter. The other part that I didn’t talk about yet, because it is very personal and generally I feel that it is my part to take care of it, is that my daughter was born sick. She was born with the Prader-Willi Syndrome which is a very rare genetic disorder. We spend the first 3 weeks in the NICU so my mood and time was not really for EVE Online or blogging.
You might ask why in the world would I put this out on the internet? That is a very good question. Generally the internet is not the place for such personally matters. But our experience is that no one knows this disorder. There is only one hospital in whole Germany that has a specialized unit to take care of the people that has it. And even on this unit there is a single doctor who specialized on Prader-Willi-Syndrome (PWS). Since I am looking into it more and more in the last couple week I keep hearing horrible stories of people taking years to get the diagnosis and all the help that they need. So even if one person reads about this and maybe in the future get the diagnose faster it is more than worth it.
On the other side I am getting to a point where I could need some help. I burned through most of my holidays during our time in the hospital. Bills are piling up and I have reduced my working hour to take care of my daughter as much as I can. And that brings me to the hardest part that I have done so far. Asking for help and especially to total strangers is not something that I take lightly. And because of all that I have created a gofundme page for my little angel.
So here I am and asking for your support. Not only for your money but also for every support that you can give. A twitter tweet or a Facebook share is greatly appreciated. Whatever you can do.
This is really hard for me because I feel that I should be able to take care of my family. And I am trying as best as I can. I could work more to take care of all the bills. But this is not the goal. When I could I would stop working immediately to take care of my daughter 24/7. It is hard enough to not be able to help your child. There is no cure so we can only make her life easier. And that is what I am trying to focus on. So if you could help us out I can not find enough words to express my gratitude.