I am going to start this blog off by letting you know that I am not a blogger, my beautiful wife Jackie is the one that does all writing in […]
I'm a mother with a busy family and a struggling little boy, and together we are trying to navigate the world of Rare Disease. It's painful and tender, fascinating and devastating, and a lot of days it just plain sucks. With 4 vibrant, happy children and a husband who will stand by me through the fiercest of winds, I am happy. This is our story, and we are still writing as we go.