Hi, We lost our daughter to Fryns on December 6, 2002. She died shortly after birth. Any information we have came directly from the genetics team at Yale...
netwhittle
netwhittle@...
Nov 12, 2002 1:08 am
6
Lynette, Thank you for writing back to me. Since then I have found some articles on Fryns and found a woman doing a study on Fryns. She was with the National...
Lynette... Hello! I'm Paula, I lost my daughter 11-29-00, due to Fryns. I am so sorry about your loss. I have a ton of info I would be glad to share with...
Hello. I am new to this board and new to learning about Fryns Syndrome. My baby passed away on 9/13/02 due to Fryns Syndrome. I was 24 weeks pregnant. This...
skoosh42
skoosh42@...
Nov 21, 2002 9:41 pm
9
Dear Susan... Hello! I am Paula. I am so sorry about your loss of your baby! I'm so, so sorry... Personally, I haven't had any more children since I lost my...
Susan, I'm so sorry for your loss. Like Paula, I would love to hear more about your baby if you want to share. I lost my son to Fryns Syndrome on 1/27/02....
Hi, My name is Michele, I recently lost my baby boy to what they believe is Fryns syndrome on 4-05-03. I am searching for any information possible. I would...
Hi Michele, I am sorry to hear your story. We lost our daughter on 12-6-01, she was diagnosed with Fryns following an autopsy. Grace (her name) was born at...
netwhittle
vincewhittle@...
May 8, 2003 12:56 am
13
Susan, I am so sorry to hear of your loss. But there is hope for a healthy child. My husband and I have a beautiful 4 year old boy at home who is our joy....
netwhittle
vincewhittle@...
May 8, 2003 1:14 am
14
Lynette, Thanks for your response. One of the other group members informed me about a study that is being conducted in California at UCSF by a woman by the...
My best friend is currently in the NICU with her 4 day old son, who is about to be diagnosed with Fryns Syndrome. He has the small hole in his heart, but its...
I am really sorry to hear about your friends baby. I can help you with what I know. There are 14 Fryns identifiers, our daughter was born with 12. Most of...
netwhittle
vincewhittle@...
Jul 8, 2003 12:56 am
18
I am really sorry to hear about your friends baby. I can help you with what I know. There are 14 Fryns identifiers, our daughter was born with 12. Most of...
netwhittle
vincewhittle@...
Jul 8, 2003 12:56 am
19
i work with a girl who is 13 who has fryns. although physically and mentally delayed she is an awesome girl. she's had 33 surgeries and as far as i know is the...
casey
Caseycandraw@...
Jul 22, 2003 9:46 am
20
That surprises me. Dr. Fryns told me in an email that the oldest person alive with fryns died at age 9. What is her mental and physical capabilities? Thank...
I am sorry I haven't let you all know. I contacted Dr Fryns who contacted the genticist working with Tyler. He is home, has been since the 10th of July. He is...
hi everyone. im new to the group. Im 21 years old and in my first pregnancy my son was still born at 27 weeks. we was diagnosed with fryns after an autopsy. He...
Hello to myangeldaniel, I'm sorry this has taken me so long to reply. Did you just receive your autopsy results back? I'm so sorry for your loss. Did you...
Well, I see a couple of familiar names... we had a baby with Fryns syndrome back in September, named Robin, and I guess in some ways I am just now dealing with...
Well, I see a couple of familiar names... we had a baby with Fryns syndrome back in September, named Robin, and I guess in some ways I am just now dealing with...
Hello, I am new here too. My son, Logan, was born with Fryns syndrome in 2001. I can't believe sometimes that almost 3 years have gone by since his birth! He...
erintfrog
erinrae1979@...
May 22, 2004 12:28 pm
28
Well, I know what you mean about being angry, sometimes... I like to think it's settling down, but time and again I'll see some "mother" screaming at her kids...
Hi Claire, I'm really behind on my email but wanted to write. I remember writing to you before. I can completely relate to your lack of patience around...
Erin, Did your doctor give you anything on fryns syndrome? I had a really difficult time but I do have a bunch of articles. I was a bit obsessed with finding...
Dear Kelly-- I am so happy to hear from you again! We are still trying, albeit sort of lacksadaisically. I'm not really into the idea of monitoring my cervical...
I would love any info you have. The father of my son (I am no longer with. Unfortunatly having Logan split us up) went on to have a little girl and needs info...
erintfrog
erinrae1979@...
May 29, 2004 1:13 am
33
Look into it a little more, cause with Tricare they are not allowed to bill the patient. Fight with them till you at least get them to pay something because...
erintfrog
erinrae1979@...
May 29, 2004 1:42 am
34
Claire, The ovulation sticks are the easy way to track if you don't want to do temps. The second time around for me (after Anthony), I was very frustrated when...
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