Guestbook
ROBERTO ORIANO
dimanche 30 avril 2006 19:46
Dear June,
As You can see I am answering to you !!!!!!
I can confirm you all what says Mustafa.
In the world there are only (fortunately) 30 or 40
AGS cases known.
Unfortunately we are in touch only with 2 English language families.
If you would like to write to me don't hesitate as usual to contact my e-mail (That you know).
A kiss to your nephew Ross
Sincerely
Roberto (Diego's Dad)
Mustafa Özer
jeudi 27 avril 2006 21:17
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Dear June!
Yes indeed, we have create this website to come in contac with other families around the world in the same situation. At this time we have contacts to many countrys. But unfortunately not every family is willing to come in contact with other families. We have of course to accept this. And sometimes the language is also a matter.
My best wishes to you and to Ross!
Yes indeed, we have create this website to come in contac with other families around the world in the same situation. At this time we have contacts to many countrys. But unfortunately not every family is willing to come in contact with other families. We have of course to accept this. And sometimes the language is also a matter.
My best wishes to you and to Ross!
JuneTonge
mercredi 26 avril 2006 18:36
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Please can you tell me why we have a web site and no one replys to us I am in touch with other familys and they all say the same ,Donna Miller aND mustaffa deal with the wed site but we dont get any replys .
Simone
mercredi 15 février 2006 21:12
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Hi,
My niece is 15 month old and is undergoing final tests prior to being diagnosed with Aicardi-Goutières syndrome.
Since birth she has suffered from many symptoms all of which I have seen on this website.
She lives in Germany so I was wondering if anybody has any contact details of any doctors or medical institutions in Germany that could help.
We feel very helpless as it seems that nobody can help or knows how to help.
Thank you in advance for any information.
Kind regards,
Simone.
My niece is 15 month old and is undergoing final tests prior to being diagnosed with Aicardi-Goutières syndrome.
Since birth she has suffered from many symptoms all of which I have seen on this website.
She lives in Germany so I was wondering if anybody has any contact details of any doctors or medical institutions in Germany that could help.
We feel very helpless as it seems that nobody can help or knows how to help.
Thank you in advance for any information.
Kind regards,
Simone.
gabrielle
lundi 30 janvier 2006 23:12
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I have a 1 yr old son who has been tested for everything under the son but the drs are now saying he has ags which is still undiagnosed. This is the hardest thing that I have ever had to deal with in my entire life. We are scheduled for and mri soon and I read that mri's sometimes cause regression. I was just hoping someone who has had one could give us a little info on whether it was a good idea or not. I am also here with support. I didnt think there was someone else out there having to go through what me and my husband and family were having to go through. god bless. and feel free to email me. gabrielle
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