Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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32 Comments

Reply Aradererie
1:53 AM on June 11, 2017 
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Reply Jane L.
10:02 PM on May 7, 2014 
Hey Aiden!!

I'm so lucky to be your teacher! Thank you for being such an amazing boy with a great zest for life! I love looking at the world through your eyes - you and your smile make the world a better place!
See you in school!
Reply Jane L.
10:01 PM on May 7, 2014 
Hey Aiden!!

I'm so lucky to be one of your teachers! Thank you for being such an amazing boy with a great zest for life! I love looking at the world through your eyes - you and your smile make the world a better place!
See you in school!
Reply Nicole
4:16 PM on June 21, 2013 
Hi C,
You are a great helper for that young boy! Thank you for advocating for him! Where are you located? And does the boy have insurance? If so, the first step is to request coverage for stiripentol from them. Most will deny it at first. There are several helpful hints in this process, so let me know if this is an option and I can send you the documents and a list of companies who are currently covering it. It will likely require several appeals.

The second place to ask for help is through any secondary insurance he might have, such as Medicaid. Several states' Medicaid programs are covering stiripentol though they may not make this information readily accessible. I can give you a list and perhaps a contact in your state.

As far as direct help, I am not aware of any programs at the moment. Dravet.org (formerly IDEA League) had a patient assistance program for this purpose, but I believe that fund has been exhausted. You might try contacting the Dravet Syndrome Foundation, though they do not have a program for stiripentol coverage of which I am aware.

The best thing we can do for our children and those coming after ours is to fight whatever insurer they have to get it covered. Let me know what I can do to help!
Reply C
4:01 PM on June 21, 2013 
Hi Nicole,

I work as an advocate for a young boy that has recently been diagnosed with DS. He has started Stiripentol and it has worked wonders so far. Although as I'm sure you know this medcation is impossibly expensive. I can't stand to watch this boy go without the medication but I can't get funding in anything but patches of help. I don't know much about the med yet, but I think it may be reasonable to assume that bad things can happen if he goes on and off and back on...Have you found any foundations that were willing to help your family with costs? I can't give up. I'm willing to try anything.

Thanks,

C
Reply TY's Mom
1:52 PM on May 18, 2013 
Hi Nicole, I read Aiden's story and I hope he is doing well. Would you please update his condition?
Thanks
Reply Kathy Kolega
2:08 AM on May 25, 2012 
All the stories are unique and yet similar on kids with Dravet's Syndrome. My sweet granddaughter Macy is three years old and has DS. Like your son, she is a brave little soul who has gone through far too much for anybody to ever have to experience. She is a Colorado native. She will be starting stiripentol soon. Fingers crossed that it will have a positive impact on her life. Best wishes to Aiden and all of your family. He is a darling little boy!
Reply Sarah Craner
7:26 PM on July 14, 2011 
Hi Nicole! What a cutie pie! :) Thanks for sharing!
Reply Jenna
9:17 PM on July 3, 2011 
Hi
My name Is Jenna and I came across your site. Aiden is an amazing, courageous, strong, and determined fighter. U are a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and I love it when people sign my guestbook. www.miraclechamp.webs.com
Reply Annie Myrick
6:49 PM on June 22, 2011 
Hello Nicole,
I believe you all are out of town (on vacation?) but I wanted you to know that I have a nurse that is very interested and avaliable to acompany Aiden to school. She has pediatric nursing experience as well as preschool teacher experience. I am meeting with her this coming Tuesday, June 28th.
Hope all is well.
Please call me when you get a chance at 303-747-4019.
Annie Myrick, RN Director of Nursing PPHC