Hello everyone. I noticed noone has been to this group in awhile.I hope someone will respond to me. My baby Jake is 29 months old.he was diagnosed with SGS at...
Hi, my name is Freida. My son Reggie was diagnosed with it a week before he passed away. You are lucky to still have your son. Reggie did not develop at all...
Hi, My name is Dianna. I am from Australia and my third child, Jarrod, passed away on 28th November 2003 (2 and 1/2 months ago) of respiratory failure due to...
Dear, On 29 february 2004 our daughter Louise was born. Immediately after birth Louise was examened at the pediatric centre of the University of Ghent, Belgium...
Stefaan Tavernier
stefaan.tavernier@...
Mar 8, 2004 1:10 pm
53
Dear Stefaan , Sorry to hear that your lovely little girl Louise has got Schinzel Giedion all you got to do is go with the flow love her as much as possible...
Hiyi All Well i cannot belief it is August and 2004 is rushing by not very much happening on here and as it is nearly the 4th year anniversary of Charlotte's...
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...
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@...
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....
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...
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...
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...
-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@...
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@...
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@...
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@...
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@...
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@...
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@...
Sep 6, 2005 7:35 pm
70
... with ... time ... i ... tube ... thick ... he ... leg ... alotoff ... young ... on ... of...
avmvbv3
avmvbv3@...
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...
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@...
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...
i need information on this type of syndrom? THANK YOU VERY MUCH...
yocastarodriguez9
yocastarodriguez9@...
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...
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@...
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...
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