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kim lund
jeudi 1 novembre 2007 19:07
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Thank you to Emily S, Kim T and Donna for taking my calls, and Dr Crow has been quick to e-mail back. We are trying to arrange for blood test to Dr Crow. WE ARE very interested in screening our daughters ages 20, 15, and 10. ALL, blessedly, healthly, beautiful and gifted. We continue to love Gavin daily, and wait for God's plans.
Kim and Sam Lund Son Gavin
vendredi 26 octobre 2007 00:35
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4 m old son newly diagnosed AGS
We need help....
We need help....
ANNALISA
jeudi 4 octobre 2007 09:08
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se c'è qualche famiglia italiana perfavore contattatemi
Paola de la torre
lundi 1 octobre 2007 16:54
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Hi,
My son was diagnosed with ags few weeks ago, he is now 15 months old. He has never lost weight and had never fevers. He is still not able to catch things,to hold very well his head and sit down correctly. However, he has always improved during these last few months ...he is less irritable, smile and laugh a lot, call us and has more axial tonus!!well we still go on to give him some omega 3 (vitamins) ..Does anyone know something about a meeting in Europe for 2007? I'm very interested in meeting the researchers, doctors and other families concerned about this disease! please let me know if it will happen!By the way, where can i get some medical articles about ags?
thanks a lot for your answers. Lots of love to your children
Paola from France
My son was diagnosed with ags few weeks ago, he is now 15 months old. He has never lost weight and had never fevers. He is still not able to catch things,to hold very well his head and sit down correctly. However, he has always improved during these last few months ...he is less irritable, smile and laugh a lot, call us and has more axial tonus!!well we still go on to give him some omega 3 (vitamins) ..Does anyone know something about a meeting in Europe for 2007? I'm very interested in meeting the researchers, doctors and other families concerned about this disease! please let me know if it will happen!By the way, where can i get some medical articles about ags?
thanks a lot for your answers. Lots of love to your children
Paola from France
Jenny Booker
vendredi 14 septembre 2007 17:04
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Hi, found this site a few weeks ago because as son sadly died on 1st August 2007. The post mortem showed that he had AGS. For 2 years 9 months he had undergone various tests but no diagnosis was found. We live in England and cannot believe how rare this syndrome is. All the symptoms fit in with Toby and his whole life of different problems. He had numerous hospital stays due to chest infections and pneumonia and also had a gastrostomy fitted in January. He never once suffered with fevers and he was always cold no matter how much you tried to warm him up. We have no other children and will have to see the geneticist again now we have a diagnosis. I find it a relief in some ways to know the cause of all his problems. Lets hope that research carries on and finds some treatments for this horrible syndrome.
Jenny
Jenny
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