Knot in my stomach…

I got an email from the NPC supermom (Addi and Cassi’s Mom). She gave me a fantastic list of things to do to start preparing “in case” we do get a diagnosis of Niemann Pick Disease type C. It gives me something to start looking into right now because if we do get the NPC diagnosis or another negative diagnosis, I don’t want to waste any time getting Hannah whatever she needs.


However, she made this comment which I can’t seem to get out of my head. It literally has given me a knot in my stomach for the past 2 hours since I read it. I see that you said her cells are growing slowly — this is common with NPC skin fibroblasts. Addi and Cassi’s did the same thing. They took forever to grow.


I know this is not an actual diagnosis, but for some reason I feel like we are one step closer to doom.