I've been home with Tess for almost six years now. I've had some epic fails, sure, and I'll talk about some of them. But I know what I'm doing. This week, I speak for the dads.
Steve and Gay Grossman are searching for others like their daughter Lilly, who has a mutation on her ADCY5 gene. Their story's been in the Atlantic and National Geographic so far. Help them find other patients -- head to ADCY5.org.
Sign up for Rare Disease Day in Maine on 2/29 -- see some great speakers and connect with other rare-disease families: Facebook | Eventbrite
Daniel Defabio's documentary about Menkes Disease: click here to watch