Haley's mom

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  • Haley's Favorite Restaurant
    by Haley's mom on November 2, 2011 at 10:52 PM
    5561 Views - 2 Comments

    With the addition of Haley's latest drug, Stiripentol, we have noticed Haley has more language and has been able to request to go places by "name". For example she says, "I want to go to the store". I will respond telling her we are going to the store. Haley will then say, "No, I want to go to the store with the red dot!" Of course that is Target! Recently she requested to go to the restaurant with "two doors and a pickle". I don't know what was more impressive, that she realized this restaurant, Five Guys Burgers, had two sets of doors, or that I totally understood where she wanted to go!

  • Our Story of Dravet
    by Haley's mom on June 11, 2011 at 9:16 PM
    4761 Views - 1 Comment

    This video captures our journey with Dravet syndrome.

  • Our Sister, Haley
    by Haley's mom on March 5, 2011 at 2:03 PM
    4221 Views - 1 Comment

    This video was made with the intention to show it to the kids at Haley's school. We wanted to explain "Haley" and Dravet syndrome to them. Originally I was going to have Haley's brothers narrate the video, but the microphone did not cooperate. I appreciate how helpful they were in this project!!

  • Haley gets the giggles
    by Haley's mom on August 20, 2010 at 2:18 PM
    4354 Views - 0 Comments

    Sometimes Haley will just get the giggles and cannot stop laughing. We caught one such episode! It is guaranteed to make you smile!

  • Haley's Dravet syndrome Story
    by Haley's mom on November 9, 2009 at 6:58 AM
    11500 Views - 10 Comments

    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.

  • Haley's First Horse Show
    by Haley's mom on September 1, 2009 at 8:46 AM
    4990 Views - 0 Comments

    Haley had her first horse show at Dreamcatchers. She rode Jake who she affectionately called "Jacob". Jake is the tallest horse at the barn, standing 17 hands high. Haley's instructor calls him "Jakeasaurus". Haley received a "bow" (as she called it) for the best posture and best reining in her class. The previous class was given ribbons for the "Best Whoa", etc. Dreamcatchers is a wonderful place that serves children with various disabilities. They have definitely been a blessing to our family.


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