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kim & desmond watson
dimanche 27 avril 2008 11:42
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Just a note to say thank you to Donna Miller for your advice regarding botox. We decided against this treatment although we noted that other parents felt otherwise. We handed all the information and advice given that we found both from this site and in general on the internet, and our consultants felt it would not be in Malachi's interest to go forward with the treatment. But thank you to everyone your views were welcome. kim
larry and emma duffield
samedi 26 avril 2008 19:25
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To anyone who`s child has had surgery following dianosis for A.G.S, it has been some time now since Evan now aged 2yrs, has had his double surgery to help improve his quality of life and to end all the severe suffering he has been going thru` over the last year or so. He had a Gastrostomy and a fundoplication at the same time and within two weeks of his surgey, we have seen a fantastic improvement in his health. he still cant sleep without his nightly medication and we now have a nurse in twice a week so emma and i can get some sleep, but we are thrilled that his life has been turned around a little.we have posted new fotos to mustafa to be included with his others. i hope this message brings a little relief to all parents that may be worried about the decision that has to be made if their child needs it.It will stop the worry for some, but this operation is not a highly successful one, and should not be taken lightheartedly. Good luch to you all in your quest to find the answer you are so desperately looking for. Please contact us if you want to find out more about Evans condition and what it may entail for the future. take care larry and emma.
Veronica Wallace
jeudi 3 avril 2008 03:43
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Hi
I just wanted to let everyone know that Gabriel's spinal fluid that was sent to Dr. Lebon in Paris for AGS testing has come back normal ruling out possible AGS diagnosis. So we are still undiagnosed. He has alot (if not all) of the symptoms of Aicardi-Goutieres syndrome. Alot of his symptoms overlap with other disorders. We are continuing with the testing from where we left off after my son Hunter died. Mitochondrial disorders are being suggessted again. (there was talk of these disorders when Hunter was alive but he was too sick to do much as far as testing) We do know that whatever disorder/disease my boys have it affects the brain which inturn affects the entire body.
I want to thank everyone that I have emailed with for the support.
I just wanted to let everyone know that Gabriel's spinal fluid that was sent to Dr. Lebon in Paris for AGS testing has come back normal ruling out possible AGS diagnosis. So we are still undiagnosed. He has alot (if not all) of the symptoms of Aicardi-Goutieres syndrome. Alot of his symptoms overlap with other disorders. We are continuing with the testing from where we left off after my son Hunter died. Mitochondrial disorders are being suggessted again. (there was talk of these disorders when Hunter was alive but he was too sick to do much as far as testing) We do know that whatever disorder/disease my boys have it affects the brain which inturn affects the entire body.
I want to thank everyone that I have emailed with for the support.
Gillian Raymond
jeudi 27 mars 2008 21:15
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Hi All,
Hope this note finds everyone well. Has anyone talked to their doctors about potential stem cell treatments? We are having no luck even finding a Dr. who will speak to us about it....
Hope this note finds everyone well. Has anyone talked to their doctors about potential stem cell treatments? We are having no luck even finding a Dr. who will speak to us about it....
Jenny Booker
lundi 17 mars 2008 22:44
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Hello All,
Thought I would keep you posted as we have our first genetecist appointment tomorrow since Toby died. It will be interesting to see what they are going to say about the syndrome and if they can help us in the future.
Hope all are considerably well
Jenny
Thought I would keep you posted as we have our first genetecist appointment tomorrow since Toby died. It will be interesting to see what they are going to say about the syndrome and if they can help us in the future.
Hope all are considerably well
Jenny
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