Haley Is My Hero

Lisa,
My maiden name is Julie Watson. We were KDs together. Sheri sent me your story and I wanted to let you know that we will be praying for Haley and your family. My husband, Jamey, and I have three daugters. Our oldest daughter, Madalyn who will be 13 years old has autism and has had two grand mal seizures. We know the life of a special needs child first hand. Haley is beautiful and a special gift from God!! Julie

What a beautiful family and loving community you live in, Haley is a beau. and a lovely site Mum, with so much dedication!

What a beautiful site dedicated to Haley and all the heros out there. I thoroughly enjoyed looking through it and especially loved the photos. Thanks for sharing it with everyone!

Haley is a litltle doll!! The twins are owe so cute too! I remember seeing you the 07 conference. My little guy has Dravet's to his website is www.freewebs.com/bryanttel or just goggle Bryant Weasel best wishes for a seizure free day

Lisa,
What an awesome website! I'm so impressed. Haley is a beautiful young lady. I'm so glad I was able to meet you and your family. I just wish we had had more time together to get to know each other better. You , Haley, and your whole family are a blessing and an inspiration to me and to so many others. Thank you!

Brenda

[miriam]
Hello Miriam! I am very honored to have included my daughter's website on yours! Thanks so much!
Love,
Lisa

I am the webmaster of www.todosobreepilepsia.com , and some time ago I came across your web site, and as it is a serious not very wellknown ilness, I have decided to include it on my site. You can see it here. (links- epilepsy in children) I hope that it's ok for you
http://www.todosobreepilepsia.com/Joomla_RT_Firenzie/index.php?op

tion=com_content&task=view&id=378&Itemid=402
My site is in Spanish, but I am thinking of translating it into English.
If you know any interesting site that is not already on my list, please let me know. Besides, I have a forum on my site. You are welcome to register and participate with useful information in the English subforum.
sorry but I dont find a mailadr. :-(
best regards. Miriam

Best regards,


Miriam...
[/miriam]

Hello

I am the webmaster of www.todosobreepilepsia.com , and some time ago I came across your web site, and as it is a serious not very wellknown ilness, I have decided to include it on my site. You can see it here. (links- epilepsy in children) I hope that it's ok for you http://www.todosobreepilepsia.com/Joomla_RT_Firenzie/index.php?op
tion=com_content&task=view&id=378&Itemid=402
My site is in Spanish, but I am thinking of translating it into English.
If you know any interesting site that is not already on my list, please let me know. Besides, I have a forum on my site. You are welcome to register and participate with useful information in the English subforum.
sorry but I dont find a mailadr. :-(
best regards. Miriam

Best regards,


Miriam...

Mary,
You and your daughter, Claudia, will be in our prayers. It is bittersweet to hear that one is being tested for Dravet especially after so many years of not knowing what is going on. On one hand I am happy that you may get an answer and on the other it is a difficult diagnosis to take at first. Fortunately the IDEA League is there for you if it does come back positive. They have been my lifeline! The people I have met there have become my closest friend although they live miles away.
If my memory serves me correctly we had Haley's results for the SCN1A gene mutation in four weeks. The testing was done by Athena Labs. The results told us exactly what was wrong, but like you the story of other children with Dravet mimicked my daughter's to a "T". I knew that this is what she had!
Thank you for your kind words. My prayer is that this website will help bring awareness to Dravet syndrome and that other children and their parents will not have to wait as long as we did for results. Please feel free to contact me anytime. You can email me directly at haleyismyhero@gmail.com. May God bless you richly even through Claudia's difficulty. Haley has truly blessed us and many others. Love, Lisa

Mary says...
Hi-
My daughter will be tested this week for Dravet's. Although we hope that she does not have to receive the diagnosis, we certainly would love to have an answer for her. She just turned 6 years old, and it is hard to believe that we have had to wait so long to possibly get a diagnosis!!! Do you have any idea how long it takes to receive the genetic test results back??? We just recently contacted the IDEA league to get some more information, and I was so impressed with their professionalism and compassion. I wish you and your beautiful family all the best as your Haley's story is so like that of our Claudia. God Bless you, and our family will continue to keep all of these children in our prayers! Maybe someday we will get the chance to meet! What a wonderful tribute your website is to your daughter, and so many others....
Mary Rosenecker- Amherst, New York

Hi-
My daughter will be tested this week for Dravet's. Although we hope that she does not have to receive the diagnosis, we certainly would love to have an answer for her. She just turned 6 years old, and it is hard to believe that we have had to wait so long to possibly get a diagnosis!!! Do you have any idea how long it takes to receive the genetic test results back??? We just recently contacted the IDEA league to get some more information, and I was so impressed with their professionalism and compassion. I wish you and your beautiful family all the best as your Haley's story is so like that of our Claudia. God Bless you, and our family will continue to keep all of these children in our prayers! Maybe someday we will get the chance to meet! What a wonderful tribute your website is to your daughter, and so many others....
Mary Rosenecker- Amherst, New York