This parent, after seeing Gabrielle on Fox 35, sent me the following email. Her daughter lost her fight against Niemann-Pick Type A.
"I hope that you recieve this email. I saw the news last night and it was the biggest shock to me when I heard the disease niemann pick. Just last year I had a daughter pass away with niemann pick disease type A. I completley understand what you are going through and I feel so terrible to see others go through this, and I just wanted to let you know that I am here for you for support. If you ever need anyone to talk to that has experience this to. So you can email me anytime as support to you. She is a beatufil little girl.
Ashley"
This is a place for me, Gabrielle's Mother, to share my thoughts, current and previous, about the ordeal we experienced while trying to find a diagnosis. The purpose of this diary is to educate and create awareness for parents who are lost in their search for finding a diagnosis and a cure for their children, who may have Niemann-Pick Type C. For more information, visit us on Gabrielle's website, http://www.GabrielleLaVerde.com
Showing posts with label Other Parents of Children with Niemann-Pick. Show all posts
Showing posts with label Other Parents of Children with Niemann-Pick. Show all posts
Wednesday, May 14, 2008
Friday, May 2, 2008
Addi and Cassi on ABC's Good Morning America
Watch this spectacular coverage on two young twins who suffer from Niemann-Pick Type C.
http://abcnews.go.com/GMA/OnCall/Story?id=4760023&page=1
http://abcnews.go.com/GMA/OnCall/Story?id=4760023&page=1
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