Little Miss Hannah

Little Miss Hannah : Our Fight against Gaucher's Disease Type 3
Little Miss Hannah
Our Fight against Gaucher's Disease Type 3
http://www.littlemisshannah.com
Parenting and Family
Hannah was born on with an enlarged spleen, low platelets, and an enlarged liver. At 5mo, she was diagnosed with Gaucher's disease, most likely type 3, a debilitating physical and neurological disease which will try to take her away from us in 15 to 20 years our so -- but we are going to fight it, no matter what it takes! Please help us fight against this horrible, very rare disease (only a few hundred children worldwide).
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Most recent posts

11/10 5:12 My person
I read an article a while back that when you are going through this "special needs/life-limiting disease" lifestyle change, you need to find just one person who you can connect with completely. Someone who understands your fears, your chaotic...
11/06 5:59 Good and the Bad
Hannah's first attempt at peas and pasta wheels - at least she tried it! It has been a rough couple of months.
11/07 0:10 Genzyme to Evaluate to-BBBs Technology for Delivering Biologics to the Brain
This could be HUGE!!! I'm waiting to hear back from Genzyme to get more details — Cerezyme, Genzyme's product, delivered to the brain! That could be what we have been waiting for!!!! http://www.genengne... 3
11/09 6:02 Cause and Effect So Simple yet
Hannah is now 15-1/2 months old. Yet to this day, I still couldn't tell you how much she actually comprehends on what level. We talk to her all the time, and there are only a handful of "
11/14 4:49 DAYC Annual Review, 15-1/2 months old, and therapy thoughts
We had our yearly review of goals and IFSP (Individualized Family Service Plan) with our Early Intervention team this week. I have been dreading it because I hate what it repres

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