That would definitely be us. We were just confirmed that now Jordon has a moderate to severely moderate hearing loss, on top of cataracts, club feet, heart...
Sharon Zehr
s_zehr@...
May 2, 2003 6:58 pm
472
Hi my name is Megan, we have a 2 year old daughter who was born a collodian baby and at 8 weeks old was diagnosed with TTD. She is a beautiful little girl with...
Hi Megan. My daughter Talitha is 4 1/2. She was born a collodian baby. No cataracts, but does have motor delays. Ongoing skin problems (eczema). We also...
Hi everyone! I have great news to share! I am so excited! We just found out that we are getting a grant that we requested!!! It is for $10,000.00 worth of...
Hi everyone! I have great news to share! I am so excited! We just found out that we are getting a grant that we requested!!! It is for $10,000.00 worth of...
Dear Julie Great news!! its always exciting when we get great news like what you received today,, congratulations I would love ot hear more about it let us ...
Welcome Megan to our group ,, this is a wonderful place to share all of your concerns and any questions or uncertaintinties and also good news and progress in...
Hi Tracy, Some days are harder than others. I just dropped Tara at school, it is a beautiful day in New York today but Tara was disappointed because she...
SnackGirl9@...
May 5, 2003 1:04 pm
479
Hi Sharron, I know how you feel about keeping track of the "equipment" that is require for daily life for our children. It is totally up to me to make sure...
SnackGirl9@...
May 5, 2003 1:19 pm
480
Dear Julie: So glad that you got good news! Who are you seeing in Maryland? We have been in touch with a few people there, and they wanted us to come, but we...
SnackGirl9@...
May 5, 2003 1:23 pm
481
I wanted to let you know that my son Kevin passed away on Friday morning after a two week battle with pneumonia. He slipped away peacefully with his mother...
Hi Maria, Hope all is well with you and your family. I see that you are using emu oil. Where did you hear about it and where can I get some? Regards, Jerry ......
Hi Julie, I'm Jerry Lopez and my wife Bonnie and I have two kids, ages 8 and 3, with TTD, and thankfully, are in good health and are very happy children. We...
Tom, Nina and Jason I am so sorry for your loss. You all must be devasted, as well as numb and feeling like you have been thru the wringer. It must have...
kelly
kelosb@...
May 5, 2003 8:21 pm
486
Karen We are going to meet with Dr. Digiovanni and Dr. Kraemer in Bethesda Maryland at the NIH clinic. They are going to do specific tests that we have asked...
Maria The Clinic that we are going to have the testing done is in Bethesda Maryland at the NIH clinic. The doctors are Dr. John DiGiovanna and Dr. Ken Kraemer....
Karen~ I hope you don't mind but I read what you wrote and just wanted to let you know that I understand how you feel. Collin is almost three but he doesn't ...
Dear Tom and Nina and Jason, I am so sorry to hear of the passing of your beloved boy, it breaks my heart to know that a common cold turning into pneumonia can...
Tom, I am so sorry to hear about Kevin. I can't begin to imagine your grief. It just reminds me how precious each day is, even the not-so-good days. It is...
Tom~ I can't even begin to comprehend how you and your family are feeling. I am so sorry to hear about Kevin. You and your family are in our thoughts and ...
My deepest sympathy to you and your family, there are no words to take away your sorrow. Thinking of you Karen, Mike, Michael & Tara O'Donnell New York, USA...
SnackGirl9@...
May 9, 2003 4:17 am
493
Dear Jerry: Dr. Krammer has also asked us to take our daughter Tara to see him. We have not done this yet, do you feel is was worthwhile? I do not want to...
SnackGirl9@...
May 9, 2003 4:20 am
494
Hi Julie, Good luck, would love to hear about the trip. I have spoken to Dr. Kramer, and his staff. They seem to be dedicated to the research of TTD. Would...
SnackGirl9@...
May 9, 2003 4:26 am
495
Hi Julie, Thanks for "listening." It is so hard to describe without seeing, Tara does walk & talk & does most of the things "normal" children do. She just...
SnackGirl9@...
May 9, 2003 4:33 am
496
Hi Karen, Where did Tara have the surgery on the cataracts?James' vision has always been severely effected and since finding out when he was about 2 1/2yrs he...
Hi Megan & Colin, welcome to our group. My name is Sharon I have a 6 year old boy with TTD. James was diagnosed with it at 20 months and has most of the issues...
Hi Jerry, I use emu oil on James as well and it seems to help keep his skin smooth and most. At the moment I'm putting it into his bath water so he soaks in it...
Maria, Please send me some more info about the register at the Childrens Hospital in Melbourne that was in your email a few weeks ago. Also where have you been...
Traf Trenches
traf_trenches@...
May 17, 2003 1:42 pm
500
Hi Deborah, I buy my Emu Oil from a couple in Sydney. This is their address & phone, they don't have a shop. Denielle & Barry Murphy Po Box 12 Gymea 2227 ph-...
