Hi Karen. I feel for you, but for several different reasons. Obviously, none of us wants anyone we know to get what we have. Why would we? But then again, it sounds to me like you got the treatment some of my peers did. I was blessed. I had a world class pediatric endo who eventually won the Order of Canada for her work. I was taught that there was not anything I couldn't do with my life. So many of my peers were given expiry dates (ie, you'll die before you are XX). I was encouraged about school, sports, travel, family, etc. I knew that I could do whatever I wanted with my life and I had parents who supported me well (taught everything to take care of me and bear the burden). So here's the thing. If your precious niece ever does get it, then you can be her shining light. The proof that she can live a good life, that nothing will stop her. You will be the one to tell her because you will be living proof.