Haley's Dravet syndrome Story

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This video captures how playful and full of life Haley was as a toddler. She was a bright little girl who spoke early and could write her name at two years old. Sadly, today at nine years old, she still writes her name the same. We made this video to educate and raise awareness for Dravet syndrome. Our prayer is that another family will not have to wait through years of seizures without a diagnosis.

Posted by Haley's mom on November 9, 2009 at 6:58 AM 11829 Views

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12 Comments

Reply Orierse
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Reply Gloryvee Diaz
12:17 PM on December 16, 2011 
Beautiful story! I have a niece with the same disorder we found out this year! Her name is Layla-Vee she a special baby, she is now 5. This story is so inspirational!

Thank you and God Bless your daughter!
Reply Erika Papay
8:26 PM on July 10, 2011 
I watched your video today...It was Like watching my own daughter who was born in 1978...same story different decade. We are in the process of having the genetic testing done. The story is identical...still having the seizures, still cant find the right combo of drugs for her...Our Krissy is 33 years old....
Reply Wolfgang
11:22 PM on December 20, 2010 
I saw your video of Haley. Our daughter was born in the same month and year and also was diagnosed with Dravet. We have fairly good success with the therapy of the Family Hope Center in Philadelphia, which we do since about a year now.
Reply Alexa Fila
2:30 AM on September 18, 2010 
I just want to thank you for sharing your Haley's story. I too have a daughter, Hailey, who fits the criteria for Dravet perfectly. After reading, researching and seeing your daughter, I have asked our neuro to perform the test for Dravet. He was all go for brain surgery and never once mentioned Dravet??

My Hailey is now 15 and has been through 23 drugs and combos, keto diet, VNS, numerous specialists and several diagnosis, all to no avail. She seizes constantly and seems to experience evey type of seizure documented.

While Dravet may not be a "Yippee" diagnosis, at least I feel some peace if we confirm the cause of her never-ending, always changing disease.

Thank you again so very much.

Alexa (Hay Hay's Mom)
Reply Anyousmous
6:11 PM on August 22, 2010 
Dear Haley's Mom,
Can you email me a link to that? I entered my email when posting this comment. Please do.

Thanks,
Anonymous
Reply Haley's mom
5:54 PM on August 22, 2010 
Anyousmous says...
You should put this video on YouTube! Then, more people could see her story.

Thanks for your suggestion! It is already on YouTube! I appreciate your support!
Reply Anyousmous
1:24 PM on August 22, 2010 
You should put this video on YouTube! Then, more people could see her story.
Reply Jill Huzzard Tatter
8:40 PM on February 19, 2010 
Lisa, Haley is just so adorable! My son Caleb had a Grand Mal that lasted about two hours back when he was 8yrs old. I am so sorry that she and your family have to go through this and I hope a cure is found soon! I'll be praying for you all.
Reply User
6:54 AM on February 5, 2010 
Nice video.
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Reply Cousin Laura
2:46 PM on January 12, 2010 
Lisa I will do everything I can to spread awareness of Haley's condition. My heart, thoughts and prayers go out to you, Haley and your whole family.
~Laura

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