I have had many changes as my life has gone on. I met an amazing woman who is my partner in everything, my wife Kate. We have traveled and had many interesting adventures. We have two amazing children, our first daughter Raven Snow, now 3.5 years, and our second, Wolf Grace, now 16 months. I am a very lucky man.
Wolf is the tiniest little lady, a smiling, magnetizing girl. How tiny you might ask? She tips the scales at 13 pounds 4 ounces, about half the size of her peers. In addition to her small stature she is developmentally delayed. She started crawling, more like sliding but I count it as crawling, at 14 months. Wolf has an extremely rare chromosome disorder, making her one of less than 100 in the world. It is called “duplication of 10Q”. The way I look at it is her genes are twice as awesome as everyone else’s!
Wolf was diagnosed at 5 weeks old. Fortunately the early diagnosis has allowed us to do everything we can to give her all the help she currently needs. The biggest problem for us is not knowing what is ahead since there are so few cases of 10q, and even fewer similar to hers.