Haley is My Hero~A Dravet Story 11 2 09

Haley is our daughter who suffers from Dravet syndrome, a rare and catastrophic form of epilepsy. It took over SIX & A HALF years for us to receive a proper diagnosis. 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.

Category:

Nonprofits & Activism

Tags:

• Dilantin
• Depakote
• Banzel

[mikeyballs123]

I cried watching your video because Haley's story is almost identical to my daughter Trinity's. Thank you so much for sharing Haley's story on line, it gives me comfort knowing that we're not alone! I'm looking forward to the IDEA League conference in Aug. Your family is in my thoughts and prayers! Together we can be strong for our beautiful children!

[haleyandtwins]

@mikeyballs123 ~I can't wait for August! It is like going to a "family reunion" of sorts! Thanks for your kind words. It will be nice to meet you in person too!!

[allijt]

@haleyandtwins Your story of you Hayley is soooooooo similar 2 my Hayleys....Thank you so much....Our girls look quite alike...its unbelievable.

[G3XBM]

Thank you for making this informative video. I do hope she has fewer seizures as she grows up and wish you all well for the future. I can imagine the worry this must be to you all.

[msepooh2001]

Doctors did diagnosis her with cortical dysplasia but her aunt (father side) has the same condition and does not have as many seizures nor are they as severe as my daughters, so I think there could be more of a problem. My daughter had genetic blood work done recently so hopefully on our next visit we will have more answers. It nice to know that there are others out there dealing with the same issues. I wish you and Haley the best, will keep both of you in my prayers and may God bless you.

[msepooh2001]

This video just blessed my spirit. I too have a child that has had seizures since she was 6 months old. She is now 16 months and continues to have them. 95% of the time they last a couple of hours in clusters and we have to go to the hospital and stay for about 2 to 3 days.

[stefanycadiz]

wow, this moved me im 19 and knew something was wrong with me when i stared my freshman year, ambulance even told my parents i faked it to get attention and no one beleived me till i had a seizure later in a car accident thank God nothing major happened. mines are control i only get em wheni dont have nough sleep or i have stressed but made me realise i shouldnt complain..i hop the best for you and always have faith.

[Lartia]

Thank you for sharing. My bff's daughter is 9 and has a 'condition' that's never been diagnosed. After researching this all day today I'm completely convinced that it's Dravet syndrome. This video made me cry. My friend is so hopeful that her daughter will grow out of it, will learn to talk, grow out of a 1 year old mentality, and be 'normal'. I want to share this syndrome info with her, but I'm afraid it will break her heart. But thank you, thank you for sharing this.