Nap-time, Nocturnal Seizures
by haleyismyhero on April 26, 2014 at 10:15 AM
2532 Views - 1 Comment
This has become a way of life for our family in 2013-14. Almost every time she falls asleep she starts to have a cluster of seizures. We will intercede with a "rescue" drug and that will buy us a day without seizures, possibly two. Then we return to the sleeping generalized tonic clonic seizures. Our hope is that Medical Cannabis could help Haley. We have been told by her neurologist in February of 2014, that there is nothing left for her to try in the world of traditional pharmaceuticals.
Purple Day March 26th & the Faces of Dr...
by haleyismyhero on March 12, 2012 at 8:06 PM
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March 26th is International Purple Day for Epilepsy. It is founded by a young Canadian girl named Cassidy Megan. This video was put together to raise awareness for epilepsy and particularly Dravet syndrome.
Haley's Favorite Restaurant
by Haley's mom on November 2, 2011 at 10:52 PM
4299 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 Sister, Haley
by Haley's mom on March 5, 2011 at 2:03 PM
3292 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's Dravet syndrome Story
by Haley's mom on November 9, 2009 at 6:58 AM
10168 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
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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.
by haleyismyhero on February 28, 2009 at 1:01 PM
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Haley gives the command "whoa" and uses her reins properly. Then announces she would now like to play the drums.
Tennessee Walking Horse
by haleyismyhero on February 28, 2009 at 12:42 PM
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Haley on Charlie, a Tennessee Walking horse. As Charlie walks, Haley gets shifted side to side. They say it is characteristic of a Tennessee Walking horse. The lateral movement is good for Haley because it will help strengthen her core muscle. Dravet syndrome has caused her to be low tone. If she sits too long, she slouches. Therefore it is good to be challenged through riding Charlie and other exercises they do on the horse. Thankfully (as you will see in this video) her side walkers will adjust her if she gets shifted too far over.
Charlie's unusual habit
by haleyismyhero on February 27, 2009 at 5:57 PM
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Charlie has a weird habit of "chattering". He sticks out his tongue and bites it and then claps his lips together. He is quirky and so is Haley. They make a great pair!!
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