Rare Genetic Disorder..

We got some heartbreaking news today. Last month, the geneticists had suggested I also get tested for IP (the genetic disorder Amelie had) as in most cases IP is an inherited disorder usually passed on from the mother. Most people with IP have some type of symptom, whereas I have none nor ever had any as a baby, this is all very unusual. We have absolutely no family history. Such a shock not just to me but the doctors too who assumed as I had no symptoms of IP, that Amelie's disorder was a spontaneous genetic mutation. We were wrong. I am also a carrier of the defective NEMO gene, it is identical to Amelies. I was just very lucky and did not exhibit any symptoms, the complete opposite to her.As the geneticists explained, we can all carry defective genes - but sometimes they aren't activated and symptoms do not present, with others they do. There is just no way to know or predict how the disorder will present. Such a disappointment, one that I cannot help but take personally.  Talk about being kicked when you are down... I know there was no way for me to know I had this disorder, there was no indication. Of course if I had known I would have done all I could not to pass it to my baby. I do not blame myself in that sense. I did the best I could with the knowledge I had at the time, I have no regrets - I did everything right. What I have trouble with though is the concept and this is what is so hard. That what took my precious, innocent little babies life came was something that came from me - I gave to her. I created her, created life, yet I also created a disorder which led to her death. I just cannot get my head around this. This makes the pain of it all so much worse. The view of myself, right now as well as in the future. Can I ever be a mother to a healthy baby, a baby who is mine? Will this dream be also taken from me? Will we ever catch a break? Why?