Good times despite Sanfilippo Syndrome!
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Uploaded by journalist2005 on Jan 8, 2009
Today is our beautiful Hannah's fifth birthday. Hannah was diagnosed with Sanfilippo Syndrome, also known as MPS III, on December 26, 2008.Unfortunately this is a terminal condition. Despite her condition she is a very happy girl and has a special gift of being able to make you feel so special and loved with just a smile.
Uploader Comments (journalist2005)
All Comments (14)
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AWW she remids me of my sister who also has sanfilippo
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I love this Penny! She is so cute. Music is wonderful and brings joy to people. I can see Hannah really likes it.
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This video makes me smile- My daughter is now 20 and she would dance around just like your princess- of course always something to chew on as well- her tunes of choice were Barney music-! Thanks for sharing! I love it- Sara was diagnosed at age 4- now 20- she still has a beautiful smile to offer us as well as a twinkle in her eye!
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Beautiful x
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From one year is drug against sanfilippo. The drug is called genistein. Polish scientists have discovered it, but they have no money for further clinic tests, so such they need help from private sponsors. I hope she and other patients will see an experimental treatment soon. Sweet girl in other way ;)
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@clhembree Im sorry to hear about your son, keep your head up and im sure he will live a happy life maybe not as normal as some people but live a happy enoyable life, i wish the best for you and your son for the future x
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my sister had sanfillipo and wont have much long to live, shes 25 and i think even thugh it is too short.. MUCH to short of a time for this lovley girl to stay seeing a video like this makes me reilise how people with sanfillipo can get on with their lives, not always normaly but try to enjoy life to the best. I hope hannah had a good birthday x
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Thanks for sharing. I found this when I was searching (and found) the video of the Polish doctor who is doing the research on Genistein. Your daughter reminds me of my niece who had Sanfilippo.
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Thank you so much for this video. My 2 yr old son was just diagnosed with MPS III 2 weeks ago. It's hard to come to terms with. Seeing you daughter at 5 gives me a little more hope in comparison to some other video out there.
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Hannah Rocks! Please give her a huge hug for us. Thanks for posting.
videomix22 3 years ago
Thanks. Im not sure who thi is though.
journalist2005 3 years ago