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celia gomez
samedi 12 août 2006 03:54
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thank you for information very helpful in child caring for
Luiz Carlos Leal Torres
vendredi 4 août 2006 14:08
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My good morning name is Luiz Carlos Leal Torres, I am 25 years old and I reside in Recife-PE-Brasil, I have a called daughter Maria Luísa Saboya Torres with 2 months of age. We discovered during the gestation that she presented Hidrocefalia, we thought it was treated of a case of origin virótica, but we didn't find any cause. After a lot of walk for several doctors, we found a Neuroftalmologista that lifted my daughter's possibility he/she to have Syndrome of Aicardi, due the carcaterísticas that she presents, as agenesia of the callous body, epileptic crises of difficult control, microftalmia, besides colosboma in the eye. We were very concerned and we would like to clear our baby it really presents or not that syndrome. Please enter in contact with my e-mail luizcltorres@yahoo.com.br. Thank you very much.
Mickaël
jeudi 20 juillet 2006 07:27
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Dear all,
My son Tristan was diagnosed as having AGS 2 days ago. Another child on this road. He and his mother are all my life.
I will write his history as soon as possible and translate it in English (we are French).
Thank you so much for the information you share.
Thank you so much for the hope.
Mickaël.
My son Tristan was diagnosed as having AGS 2 days ago. Another child on this road. He and his mother are all my life.
I will write his history as soon as possible and translate it in English (we are French).
Thank you so much for the information you share.
Thank you so much for the hope.
Mickaël.
ROBERTO ORIANO - MUSTAFA OEZER
mardi 11 juillet 2006 21:37
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Dear Friends,
The results of the meeting in Pavia have been exceptional because are giving to all us new hope.
However the information has to be correct in order to avoid easy illusions.
The results of the scientific research is the discovery of the AGS genes.
The consequence of this discovery is the possibility to have in a short time a test that MUST to be sure at 100%.
Obviously the test will solve the AGS problem only for new pregnancies.
The problem that remains is the cure of our children that live in the present. The discovery of the genes don't solve this but can be an important start point for new scientific research from whom we wait anxiously an answer.
A complete and official relation on the results of the conference will be published by doctors on the web-site within the next September.
I would like to invite every family to give the necessary collaboration when the doctors will ask informations by questionnary rather than blood, CSF, or skin because this is fundamental for the scientific research.
FIGHT ON AND NEVER GIVE UP - this has to be the philosophy of life for each and every one of us.
For further informations don't hesitate to contact us.
A big hug to all the children.
Sincerely
Roberto Oriano and Mustafa Oezer
Representatives of IAGSA families
The results of the meeting in Pavia have been exceptional because are giving to all us new hope.
However the information has to be correct in order to avoid easy illusions.
The results of the scientific research is the discovery of the AGS genes.
The consequence of this discovery is the possibility to have in a short time a test that MUST to be sure at 100%.
Obviously the test will solve the AGS problem only for new pregnancies.
The problem that remains is the cure of our children that live in the present. The discovery of the genes don't solve this but can be an important start point for new scientific research from whom we wait anxiously an answer.
A complete and official relation on the results of the conference will be published by doctors on the web-site within the next September.
I would like to invite every family to give the necessary collaboration when the doctors will ask informations by questionnary rather than blood, CSF, or skin because this is fundamental for the scientific research.
FIGHT ON AND NEVER GIVE UP - this has to be the philosophy of life for each and every one of us.
For further informations don't hesitate to contact us.
A big hug to all the children.
Sincerely
Roberto Oriano and Mustafa Oezer
Representatives of IAGSA families
Kimberly Taylor
lundi 3 juillet 2006 05:08
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Hi,This is to anyone who wants to know what exactly was the update at the meeting in Pavia, June 10th. They have found 4 genes for AGS, and now it can be picked up in pregnancy. They also need more blood samples from affected children. So anyone out there who can send a sample please do. My daughters sample was sent to Dr.Yanick Crow in Leeds,England. His e-mail address is y.j.crow@leeds.ac.uk or yanickcrow@leedsth.nhs.uk Or speak to your neurologist and they will reach him for you. Please we all need to make a difference, for our children and for the future. And possibly a treatment. I was told there are now 100 children and there are more that have not been diagnosed!
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