Haley's Dravet story Oct 2009 0003
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Uploaded by haleyandtwins on Oct 19, 2009
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Uploader Comments (haleyandtwins)
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All Comments (8)
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Very much like Charlie's Story ... very sad but haley is so-ooo beautiful!x
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Oh little jellybean...
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hi haley and family...
very moving vid. shows a happy little girl. our son Cole has dravet syndrome and too are a member of the idea league. big hugs and kisses to haley. jj
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God Bless Haley!!!!!
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Hello,
this video made me cry.
I am a researcher in epilepsy and would like to show parts of your video to other researchers. Would you mind?
big hugs to Haley!
PepeCorsica 1 year ago
@PepeCorsica ~I would be honored if you used the video as a tool to inform anyone about Dravet syndrome. I would also love to hear more about what you do and continue this conversation off this forum. You can contact me at haleyismyhero@gmail.com Thanks!!!
haleyandtwins 1 year ago
Our little 8 year old Oliva girl had her first seizure aged 7 months. A lifetime of AEDs twice daily and an SMEI/Dravet's diagnosis. A happy little soul, everyday is "Merry Christmas"!
Best wishes, =David, Tracy, Olivia and Grace. (Leighton Hosp. Crewe/ Alder Hey UK)
reddishtyke 1 year ago
@reddishtyke~It is a difficult diagnosis, but it helps to know we are not alone in our struggles. I see you are in Crewe, there is another family that lives there with a little boy Riley that has the Dravet diagnosis. Do you know Derek Amson? I had the pleasure of meeting him in the USA when he came to run the Marine Corp Marathon. What a wonderful individual!
haleyandtwins 1 year ago