Preparing for the worst…

That old addage “preparing for the worst, but hoping for the best”… that is where I am right now.  I’m tired of crying about the “what if’s” and the “could it really be true,” I’ve decided to just prepare myself for the worst — that she has Niemann Pick type C, the lead diagnosis we are currently waiting for the skin biopsy results on.  Even if she has Gaucher’s, we still have more hope as there is some treatment available.  Anyone who knows me personally knows that I am not the type of person to sit around and do nothing and wait.  I admit I’m impulsive, and when I have my mind set on something, I will do what it takes to make it happen.   

I have been talking to a few moms of children who have Niemann Pick type C via email, and I even spent an hour talking to an amazing mom from Canada who just got the skin biopsy results the day before I talked to her.  Her toddler boy has NPC.  They all opened their hearts to me, let me ask questions, and gave me such support that I truly feel stronger now.  I look at one mom who I’ve been email with, Chris, who has gorgeous twin girls with NPC.  She is so amazingly proactive — getting the girls’ story on television, prominent scientific magazines, fundraising for research.   She told me to get started now and prepare…just in case.

So, that’s what I’m going to do right now.  Prepare for the worst, and pray for the best.  If it is NPC, then I want to be ready the day we get the diagnosis to get Hannah everything she needs.  If it isn’t NPC, then I will have somewhat wasted a couple of months — but it is not really a waste, because for everyone who reads this blog, they now know what Niemann Pick disease is and how devastating it is.  Exposure is so important with this disease. 

I have dozens of ideas in my head right now.  I know I’m going to need A LOT of help from my friends and family — both resource-wise, brainstorming, and even fundraising support in their local communities.  i need to work on a game plan.  I need to have everything ready so IF the day comes and it is NPC or Gaucher’s (since I’m going to plan for both), then Hannah will have everything she needs THAT moment the word comes down.  And if it isn’t either NPC or Gaucher’s, I will work on this plan until the day that a diagnosis IS found for her condition.

I’ll most likely be sharing most of the ideas here in my blog.  This is the “ground floor” of getting Hannah well.  I’ll be damned if I don’t try everything in my power to keep Hannah well and give her a long, happy, and comfortable life!