Guestbook
Maria Helena Rossi
jeudi 6 décembre 2007 14:22
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I am brasilian physiotherapist of a child that has recently received the diagnosis of aicardi-goutières syndrome. I need now more information about it. How can I do?
Paola de la TORRE
jeudi 6 décembre 2007 12:54
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Hi everyone,
I'm sorry to reply so late and not to each of you but i had some troubles with my internet connexion!!
A special thank to Mickael Royer, Gillian Kanitzt, Anna lisa , June Tonge and Donna Miller for all their informations and advices.....
Donna, I'm still interested in participating to a meeting wherever it can be ....that would be great if we could arrange one the next year!!give me more details and i could ask the french families
I send you lots of love and kisses to u and your children
Paola
I'm sorry to reply so late and not to each of you but i had some troubles with my internet connexion!!
A special thank to Mickael Royer, Gillian Kanitzt, Anna lisa , June Tonge and Donna Miller for all their informations and advices.....
Donna, I'm still interested in participating to a meeting wherever it can be ....that would be great if we could arrange one the next year!!give me more details and i could ask the french families
I send you lots of love and kisses to u and your children
Paola
Kim Lund
jeudi 6 décembre 2007 07:44
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Hamida, when you say ummar is alot better, What do you mean by feeding well? Was there onset/course different? Do either one of the boys attempt to communicate?
ALSO ANYONE know how to reach Hessel Anne's family??
ALSO ANYONE know how to reach Hessel Anne's family??
Hamida Rafiq
jeudi 6 décembre 2007 07:17
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hi my name is hamida rafiq i have 2 boys with a.g.s i live in the uk my oldest son is 4 yrs old and i have a baby who is turning 1 on new years eve both have a.g.s adam who is the oldest has severe devolpmental problems ummar is alot better he has good head control and feeds well adam requires alot of help this is a good outlet for parents like us
Veronica Wallace
mardi 4 décembre 2007 04:08
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Hello. My first son Hunter died at 25 months to an unknown disease or syndrome. Now we have a 17 month old (Gabriel) with the same symptoms. Although not as severe. A doctor is thinking about AGS but is wanting to see my first son's autopsy first. How serious is this syndrome. Is there any hope that Gabe will not die. He has only been sick once (2 weeks ago) with pnemonia. No fevers or seizures.
Feel free to email.
Feel free to email.
389 entries in guestbook