Just to let you know that there are families out there that are with you in your journey.They are beautiful,loving children that can & will teach us & those around them. Jamie-Lyn was a teacher to all. She touched many lives, as I know Hannah already have & will continue to do...Oh those beautiful eyes! Sincerely Victoria Marchant
I live in Squamish BC Canada. Our daughter Jamie-Lyn was born with Sanfilippo 'A' in 1983. Jamie never slept & was increasling showing signs that something was wrong. By the time she was 3 we got the devasting news. Watching your children brings back so many memories. Jamie-Lyn passd away 15 years ago at the age of 14. We have another daughter, Jennifer who was not born with Sanfilippo.
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!
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 ;)
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
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.
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.
@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
Just to let you know that there are families out there that are with you in your journey.They are beautiful,loving children that can & will teach us & those around them. Jamie-Lyn was a teacher to all. She touched many lives, as I know Hannah already have & will continue to do...Oh those beautiful eyes! Sincerely Victoria Marchant
Victoria1009 1 day ago
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I live in Squamish BC Canada. Our daughter Jamie-Lyn was born with Sanfilippo 'A' in 1983. Jamie never slept & was increasling showing signs that something was wrong. By the time she was 3 we got the devasting news. Watching your children brings back so many memories. Jamie-Lyn passd away 15 years ago at the age of 14. We have another daughter, Jennifer who was not born with Sanfilippo.
Victoria1009 1 day ago
AWW she remids me of my sister who also has sanfilippo
jflys423 1 week ago
I love this Penny! She is so cute. Music is wonderful and brings joy to people. I can see Hannah really likes it.
MrsAmyLG 1 year ago
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!
SARASMPSMOM 1 year ago
Beautiful x
kevin6000000 1 year ago
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 ;)
hyerkill 1 year ago
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
cheeserocksbabey 1 year ago
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.
calliegal235 1 year ago
Comment removed
ilovehellokitty92 2 years ago
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.
clhembree 2 years ago
@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
cheeserocksbabey 1 year ago
Hannah, You are BEAUTIFUL!!!!
Keep dancing sweetheart!!!
There is nothing more beautiful than seeing the simple joy music truly brings to our children!!
I will add Hannah to our prayers that someday soon, they will find answers to MPS III and ML as well!!
God Bless and thanks for making us a friend!!!
jhrufus 2 years ago
GOD BLESS!!!
phunkp 3 years ago
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
Hannah Banana. Sign her up for "Dancing with the Stars". We love and miss you guys.
dadams6593 3 years ago