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schinzel-giedion_syndrome · Schinzel-Giedion Syndrome
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Messages 56 - 85 of 97   Oldest  |  < Older  |  Newer >  |  Newest
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56
My wonderful cousin lost her son on January 31, 2005. His name is Jake. He lived with and fought Schinzel Giedion for 3 years 4 months and two weeks. I watched...
cheri
cheriashlee
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Feb 9, 2005
12:46 pm
57
Jane Elizabeth M Forde would like to invite you to join their network of contacts at http://www.wayn.com Visit...
Jane Elizabeth M Forde
cuddlies34
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Apr 24, 2005
6:10 pm
58
Hello everyone. Emely and William here. We are the parents of Marius Emwill, 1 & 7 mos old diagnosed as SGS. He's the first reported case here in our country....
mariusemwill
mariusemwill@...
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May 9, 2005
6:32 pm
59
Hi Emily & William, My name is Dianna Rea and my son Jarrod also had SGS. Sadly he passed away at the age of 3 months. Jarrod would have been 21 months old....
Dianna Rea
direa2002
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May 12, 2005
9:17 pm
60
Hi , Jane Elizabeth M Fordehas invited you to join WAYN - Where Are You Now? - a unique website which helps you to keep track of your friends from around the...
Jane Elizabeth M Forde
cuddlies34
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May 16, 2005
12:47 am
61
Just to let you all know, SGS has claimed another young life. My son, Patrick Aidan, lost his battle with SGS in April 2005, after suffering from respiratory...
tata4now62
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May 27, 2005
6:06 pm
62
Wanna inform you too that my son, marius emwill with SGS has passed away this may 30 at 10pm. he has very high fever, i think he died because of infection and...
william lababo
mariusemwill
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May 31, 2005
9:52 am
63
-My husband, Andrew, and I gave birth to a son, Jacob Patrick,on 27 January 2005(our 2nd child). Initially it was believed that Jacob had Pallister Killian...
brttrgh
brttrgh@...
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May 31, 2005
2:08 pm
64
Please be sure to go to my website at schinzel-giedion.org where you may order articles about Schinzel-Giedion Syndrome from me, sign my guestbook, send me a...
lois.huisman@...
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Jun 3, 2005
2:36 pm
65
... son, ... feel ... be ... watched ... Dear Laurie, All our thaughts are with you. We truly believe that he can now play with all the other children. Our...
tva224420
tva224420@...
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Jun 21, 2005
3:02 pm
66
Jacob, My name is Lousie, born 29th Februaru 2005, and I am also diagnosed with SGS. I have the same symptomes as you. I am taking a lot of anti-seizure...
tva224420
tva224420@...
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Jun 21, 2005
3:02 pm
67
... Dear Marius Emwill, My name is Louise born 29th of February 2005. I am also diagnosed with SGS. I have a lot of seizures but through medication...
tva224420
tva224420@...
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Jun 21, 2005
3:04 pm
68
... away this may 30 at 10pm. he has very high fever, i think he died because of infection and of course his health cannot tolerate such pains anymore thus he...
tva224420
tva224420@...
Send Email
Jun 21, 2005
3:04 pm
69
Laura Marrocoli is now 4 years and one month old. She was very close to go last July because of a bronco-pneumonia due to the food going inside the langs when...
marrocolid
marrocolid@...
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Sep 6, 2005
7:35 pm
70
... with ... time ... i ... tube ... thick ... he ... leg ... alotoff ... young ... on ... of...
avmvbv3
avmvbv3@...
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Oct 10, 2005
7:25 pm
71
Blake is my son, he is almost 3 months old, he was diagnosed 2weeks ago with sgs. he is so small, but he is steadily gaining weight, he eats like a cow. he is...
avmvbv3
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Oct 10, 2005
7:26 pm
72
I am attempting to determine how many cases there are of families that have had more than one Schinzel-Giedion child. Please send a message to this group if...
huislk
lois.huisman@...
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Dec 2, 2005
9:08 pm
73
Hi Louise, Jacob's seizures are getting progressively worse and are barely being managed by anti-seizure medication. He currently takes epilim and rivotril on...
jpbrettargh
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Oct 17, 2006
11:04 pm
74
... that ... message...
yocastarodriguez9
yocastarodriguez9@...
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Dec 30, 2006
2:10 am
75
i need information on this type of syndrom? THANK YOU VERY MUCH...
yocastarodriguez9
yocastarodriguez9@...
Send Email
Dec 30, 2006
2:11 am
76
I had a daughter diagnosed with SGS she was born on 30 March 1990 she was the bravest person i have ever met always smiling she brightened up any room I called...
lilwheeze
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Oct 2, 2007
12:05 am
77
My son was recently diagnosed with this syndrome and I know nothing about it. I have been searching all day for answers....Let me know if you hear of anything ...
kjaw63
kjaw63@...
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Nov 14, 2007
2:13 am
78
Hi I just got your message. My son was diagnosed with SGS. If you still have questions PLEASE let my know. I will try and answer as many as I can. how old is...
Jen mccarty
jenn.mccarty
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Nov 16, 2007
12:31 pm
79
hi there my son passed away 2 week after born because of SGC his condition was so complicated . and he needed 100% oxygen his kidney started to failed and he...
SHADI ONSORI
shdonsori
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Nov 17, 2007
5:00 am
80
HI my name is Sharla Spencer and my son Matthew was born Dec.16,1988 he was sent to UK hospitl in Lexington Ky were I was told he had SGS..It broke my heart...
sharla_spencer
sharla_spencer@...
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Nov 18, 2007
4:42 am
81
devon lived a year and 4 days its hard for me to still talk about it open like this but i will talk to anyone who has any questions i put up some pics of me...
dylsdad80
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Nov 18, 2007
6:29 pm
82
Hello, My son Reggie passed away of SGS March 9,2002. He lived to be almost 6mos old. From the day he was born to the day he left this earth was a daily battle...
Freida Hughes
freidahughes
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Nov 18, 2007
8:15 pm
83
Hi, I had a patient who's first child was diagnosed with SGS and later died. The child's picture appears on the website. After years of waiting, the mother...
tina victoria
tinavictoriamd
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Dec 4, 2007
4:46 am
84
Hi there My daughter Sofie has just been diagnosed with SGS. She is 6 weeks old and I am finding it hard to locate any practical information regarding this...
leithgatchell
leithgatchell@...
Send Email
Mar 26, 2008
11:15 pm
85
... it ... put ... Hello, I'm really sorry to hear that your beautiful son passed away, i have just been looking at his photos. My heart goes out to you and...
holliday.kelly
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Jun 26, 2008
10:30 pm
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