Haley Is My Hero
"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles." ~ Christopher Reeves
Haley's Favorite Restaurant
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!
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2 Comments
Connie,
I just sent you an email to your email address posted here. I would love to help you in any way I can. I sent you my cell phone number in the email. Please give me a call!
Hugs,
Lisa
I just sent you an email to your email address posted here. I would love to help you in any way I can. I sent you my cell phone number in the email. Please give me a call!
Hugs,
Lisa
Connie says...
Hi Haley's Mom,
After reading Haley's story, 'mI so glad to know Stiripentol is working for her, I just learned about this new drup about a week ago, my twin boys, both of them are dianogsed with Dravet Syndrome, in your post, you mentioned, your old neurologist (who is also a senator now) able to help you get the drug approved by Virginia Medicaid, We are also live in Virginia, can you please help me get some idea, if we want to try this new drug, what are the procedure we should follow?
Thank you for your time, and I'm look forward to hear from you soon.
Connie
Reply
Connie
03:19 PM on January 02, 2012
Hi Haley's Mom,
After reading Haley's story, 'mI so glad to know Stiripentol is working for her, I just learned about this new drup about a week ago, my twin boys, both of them are dianogsed with Dravet Syndrome, in your post, you mentioned, your old neurologist (who is also a senator now) able to help you get the drug approved by Virginia Medicaid, We are also live in Virginia, can you please help me get some idea, if we want to try this new drug, what are the procedure we should follow?
Thank you for your time, and I'm look forward to hear from you soon.
Connie
After reading Haley's story, 'mI so glad to know Stiripentol is working for her, I just learned about this new drup about a week ago, my twin boys, both of them are dianogsed with Dravet Syndrome, in your post, you mentioned, your old neurologist (who is also a senator now) able to help you get the drug approved by Virginia Medicaid, We are also live in Virginia, can you please help me get some idea, if we want to try this new drug, what are the procedure we should follow?
Thank you for your time, and I'm look forward to hear from you soon.
Connie
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