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EvasMamma

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Hi
My name is Sadie. I am Eva's Mamma. Eva was born in August and died in October of 2010. The primary diagnosis that was given was early infantile epileptic encephalopathy. At one point an EEG recorded 100 seizures in one hour. Eva didn't test positive for any of the metabolic disorders that typically cause this disorder. We are at a loss of what caused this disorder that took our baby girl from us. I fear that this will happen again if we have another child. Since this is such a rare disease, I hope to speak with other parents that have experienced this as well.
Thank you in advanced for your support.
-Sadie
 
Sadie, I am so sorry for your loss. I send you big hugs and hope that CWE can help.

Best,
Nakamova
 
I am so sorry to hear about Eva. I cannot even imagine how heart-breaking its been for you. ***hugs***
 
Sadie,

I am so sorry about the loss of your little girl. I can't even imagine how hard that must be. Know that we are with you, and you can talk to us any time. <<<<hug>>>>
 
Hello Sadie,
I was touched by your post and am truly sorry for your loss. Like Endless, I can't even beginn to imagine what you must be going through. I hope you find help here, you certainly will find someone to listen and to comfort, even maybe someone who experienced the same tragic loss. You never know, but please don't feel alone, come online, everybody will make you feel welcome and understood. I send you a hug, a strong but loving one !
 
Sadie,

I am so sorry that you lost your little girl, can't even begin to imagine what you have been through.

My son was diagnosed with EIEE in August 2011. It was found that he has a genetic mutation on his X Chromosome, specifically in the ARX gene, most people's repeat about 8-16 times his repeats 22 times.
We've not been given much information about it as no one seems to know much about it .
It can be passed on, so my son will pass on should he have any children, my daughter has to be tested when she is 15 to see whether she is a carrier.
I hope this has helped a little.
My heart goes out to you and your family. xx
 
Sadie,

I am so sorry for the loss of your baby girl.

Like the other who have posted, I too can not image what you are going through.

Just remember that we here at CWE at here for you.

HUGS
 
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