I say “round 1” because after everything I’ve read, this is going to be a long process to get Hannah covered and to find out exactly what Aetna will end up covering. Apparently it isn’t as straight forward as 90%/10% (we cover 10%) and a yearly max-out-of-pocket like our coverage says. Basically, Aetna, our doctor’s […]
[Continue reading...]Feeling weird for not feeling depressed
12 Jan by
Stupid, I know. I don’t know if it is because we were expecting a diagnosis of NPC, which would have been much worse for Hannah, or if it is because I’m relieved to finally have a diagnosis and now “know the enemy,” or if it just really hasn’t hit me yet, but I am feeling […]
[Continue reading...]Wow, over 250 members!
10 Jan by
Hannah’s facebook cause has reached beyond the 250 member mark. That is 250 people who now are aware of Gaucher’s disease and what it can do. That is 250 people who can help spread the word about this disease that affects 10,000 people worldwide. Absolutely amazing! To all of you who have joined, thank you, […]
[Continue reading...]Gaucher’s…What I know now
10 Jan by
I’ve updated my Gaucher’s page above, so if you want to get more detail into what this disease is all about, click here. Hannah has the most severe form of Gaucher’s disease, regardless of which type it is. Whereas most Gaucher’s patients have a deficiency in the glucocerebrosidase to some degree, Hannah’s fibroblast study shows […]
[Continue reading...]Special Child Friday: Addi and Cassi
9 Jan by
I’ve had so much support and visitors following Hannah’s story, that I felt it would be important to share the struggles and stories of other parents with children with rare diseases that most of you have not heard of. So every Friday, I’m going to highlight another special child like Hannah. Addi and Cassi Hempel […]
[Continue reading...]Feeling like crap…
9 Jan by
I admit it, I feel like crap this morning. Just drained. I know it is my own doing, you know. I’ve been staying up late for so long researching and waking up early because of the kids. Now that we have a diagnosis, there is SO much more to learn and research. The information is […]
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