Children’s Rare Disease Network

Children’s Rare Disease Network
http://www.crdnetwork.org

Hannah’s Story

Read Hannah's Story
Recent Posts

02.06.12 Impossible to sum up

02.06.12 Hannah won the pool…twice!

02.05.12 Make-A-Wish, we are eternally grateful!

02.01.12 Wordless Wednesday

01.30.12 It all fits into a box

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How to Help

Hannah Ostrea Fund
c/o Wells Fargo Bank
640 South Green Valley Parkway
Henderson, NV 89052

All funds will be going towards the creation of our Little Miss Hannah Foundation
Hannah’s Diagnoses

* neuronopathic Gaucher Disease
* severe hypotonia
* choreathetoid movement disorder
* left eye nystagmus
* supranuclear gaze palsy
* breath-holding spells
* brainstem dysfunction
* ocular motor apraxia
* global devedelays
* hepatomegaly
* splenomegaly
* vocal cord paresis
* reflux
* enlarged aorta
* decreased blink reflex
* slight eyelid retraction
* interstitial lung disease
* hypersensitive gag reflex
* food aspiration
* increased startled reflex
* diffuse ligamentous laxity
* genu valgus abnormality
* IgA deficiency
More Gaucher Children

Addison
Olivia
Emily
Emilka
Elizabeth (Zebby)
Kyle
Bailey
Marina
Stella
Lincoln
Joseph

CGRF Summer 2010 Newsletter

National Gaucher Foundation
The Whole Story
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