Guestbook
Ranya
lundi 7 juillet 2008 09:26
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Hi everyone,
1 year and four months ago I lost my son. He was nine months old when he passed away. I only found out he was sick after. As I have been reading, it seems like the symptoms are hard to diagnos. When I read what other parents have written about their children and their symptoms, I just want to shout at the computer and say, "that's how Sam was!". His doctors always said it was a "virus"... the unexplained fevers... the slow development was just because "every child grows up differently"....the constant crying was because, "that's what babies do, maybe he has gas". As much as I called his doctor, I would get the same response each time. But I am confused. Even though its been a year since I lost him and I have the medical report saying he had this disease, I still want to know how it happens. I don't want to described the situation in which I found him, so if someone who is very familiar with this disease could please contact me, I have questions. I miss him every day and I can't believe that I had him and now he is gone. He was my only child. God bless all of your children and you as their parents.
1 year and four months ago I lost my son. He was nine months old when he passed away. I only found out he was sick after. As I have been reading, it seems like the symptoms are hard to diagnos. When I read what other parents have written about their children and their symptoms, I just want to shout at the computer and say, "that's how Sam was!". His doctors always said it was a "virus"... the unexplained fevers... the slow development was just because "every child grows up differently"....the constant crying was because, "that's what babies do, maybe he has gas". As much as I called his doctor, I would get the same response each time. But I am confused. Even though its been a year since I lost him and I have the medical report saying he had this disease, I still want to know how it happens. I don't want to described the situation in which I found him, so if someone who is very familiar with this disease could please contact me, I have questions. I miss him every day and I can't believe that I had him and now he is gone. He was my only child. God bless all of your children and you as their parents.
Donna Miller
lundi 7 juillet 2008 03:11
I apologize that the previous site did not work. Please try www.geocities.com/agsclinic to register online for the conference.
Donna Miller
vendredi 4 juillet 2008 04:04
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Announcement: There is now an on-line registration option for the Washington D.C. clinic. Please go to:
www.geocities.com/agsconf to register online.
Thank you.
www.geocities.com/agsconf to register online.
Thank you.
Donna Miller
mardi 1 juillet 2008 17:23
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You are invited to come to an AGS clinic being held in Washington, D.C., USA, on September 26th-27th, 2008. There are only slots for 24 patients. Many of you know Dr. Crow, the geneticist from England who found the genes for AGS. He will be at the clinic, along with several other AGS doctors. The clinic itself is free; however, travel, lodging, and some meals will be at your own expense. Please look at this site to get much further information http://agsconference.atspace.com/agsconference.pdf. Please keep checking this web site for more updates. As of now, the registration page can be downloaded, printed, and mailed in. We hope to have an on-line registration option in one or two days. We realize that travel and lodging expenses may cost alot. There are free travel options listed in the clinic info packet; please use these to try to get free travel. Also, for any patient who has Medicaid services, we urge you to contact your case worker because they may be able to cover other travel, lodging, and meals if you ask them.
Sincerely,
Donna Miller
Sincerely,
Donna Miller
kim lund
mercredi 25 juin 2008 20:38
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I am putting together a hard copy handbook for families...This includes facts, helpful hints, and some photos and family stories.
I am looking for any information on the following
1. # of children who have survived to 10 yrs of age with NO G tube
2. Children that are able to speak
3. Children that are using assistive communication devices
4. Children that are toilet trained/scheduled.
5. Children with any mobility including weight bearing for transferring or dressing.
6. Children who self feed
7. Children on Leucovorin Calcium
8. Children getting water and or equestrian therapy
I have almost one of each of the above, but am looking for more
Thank you
I am looking for any information on the following
1. # of children who have survived to 10 yrs of age with NO G tube
2. Children that are able to speak
3. Children that are using assistive communication devices
4. Children that are toilet trained/scheduled.
5. Children with any mobility including weight bearing for transferring or dressing.
6. Children who self feed
7. Children on Leucovorin Calcium
8. Children getting water and or equestrian therapy
I have almost one of each of the above, but am looking for more
Thank you
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