Help us find a cure for Niemann Pick A
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Uploaded by chephillips123 on Jun 27, 2010
I created this slideshow in memory of my daughter Anna Marie...She was diagnosed at 4 months old with a very rare disease...Niemann Pick type A. She underwent an experimental umbilical cord blood transplant at 7 months. Although the transplant slowed the progression of the disease, nothing could stop it... She passed away when she was 3 years 4 months and 10 days old. I was completely devistated and will never be the same...She would have turned 6 on june 24th 2010. I created the video in loving memory on her birthday. She will be in my heart forever! I hope you enjoy seeing her beautiful little face.
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my cantry romania.no spyck good engleese aym soryy pentru fica ta.my brader is ded nieman-pick-c.
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Hello. My heart goes out to you and your family. My family and I are suffering from this disease and I hurt everyday watching my nephew having to suffer from this. I will not give up on this as I do walk-a-thons and other events to raise money and awareness. I want to do more to get my families story out there. I have a bit of a medical background and will continue to learn more to help families who suffer and who need advice. Please reach out to me as I'm reaching out to you.god bless you
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I am so sorry that anyone has to battle this horrible disease. I will continue to spread awareness to help find a cure. My heart aches for the families dealing with this battle. Please email me at chephillips123@yahoo.com if there is any way that I can help other families out there...even just to talk/vent.
chephillips123 4 months ago