Hi Sharon I would love to catch up with you when you are down this way in July our phone number is 02 60404091 I have miss placed your number as well, give me...
Hello everyone Due to the spam we have been receiving, i have changed a couple of settings on the group account. For now, maria and myself will receive the...
kelly macleod
kelly.macleod@...
Jun 18, 2004 10:44 pm
708
Hi everyone! Sydney is doing well. Her life is much more stable since beginning IVIG therapy last fall, this has really cut down on infections. We did learn...
We've found that our girls can only last about 45 minutes outside---with sunscreen on---without getting burned. Any longer and they start to get pink. Our...
Hi Jodi~ Collin was very slow hitting his milestones. He could not sit on his own without help until he was three years old. He did not crawl until he was...
Hi Jodi Thank you for your email , it was great to hear from you. SammyJoe is 15 and intellectually functioning imbetween the ages of 4 to 7 , he was very slow...
Julie , I was told the same thing that SammyJoe would never walk or talk and now he runs and doesnt stay still one bit ,,so hang in there all of you the...
I was just browsing the home page (looking at all the cute pictures of Sammy Joe, Alex, and Zoe), and I noticed that one of the links is to the Ectodermal...
I love the new pics they are great !!! and yes SammyJoe and Christian are the light of our lives also ,,I have to add a pic of Christian also ,,he wont let me...
Hi Jodie, James has a lot of problems in the sun. He can't go out for long lenghts of time without being covered and with a large hat for his face....
Sharon Slender
silverdalelawnies@...
Jul 5, 2004 2:02 pm
719
Dear Kasie, Just wanted to let you know, that my daughter Tara would not wear her glasses either, until she had the caateract surgerery. I don't think it made...
i have posted some links in our link page that may help , I was unable to find a Service seeker for Australia I will continue to search and as soon as I have...
Hi. I don't know if it is even right for me to be posting on this sight, since my daughter does not have a diagnosis of TTD yet. Her geneticist wanted her...
From: Jennifer Philps To: 'Maria' Sent: Friday, July 02, 2004 9:17 AM Subject: RE: Trichothiodystrophy Dear Maria Thank you for your enquiry and yes I can...
Dear Tammy. There are some links in SammyJoes webpage you can probably find out that information I believe the only connection to TTD are Blooms syndrome ,...
Hi Amy , Thank you for writing , You may want to direct your questions also to The Doctors at the National Institute of Health in Bethesda , they are very...
I have found the link also for those of you in Australia Australian Association for families of children with a disability or illness www.acd.org.au or contact...
Hi Maria, We live in Brisbane. Talitha is almost 6, was diagnosed at 6 months. Regards, Chris. I have a question for all the people in Australia , could u...
Our daughter is 15 months old. She saw a genetics physician in Minneapolis that gave us the diagnosis, however we had been suspecting it since she was about 1...
Thanks for the info. you provided. Our daughter's geneticist has been out of town for two weeks, so I was just getting a little anxious for any info. anyone...
Hi everyone , I have written to The Childrens Medical Research Institute of Australia and recieved several responses , they are quite interesting in hearing...
Dear Amy. When investigating TTD they will ask you alot of questions relating to developement and also about how senstitive she is to the sun . if her immunity...
-Dear Everyone , I have added several links to the links section of this group , please check them out as they may be helpful to you in finding services for...
Hi Amy. Even though you don't have a diagnosis for your daughter, by all means feel free to ask anything you like. As well, even if you do get a different...
Dear Everyone, I am building an alliance with the Childrens Medical Research Institute of NSW , for the importance of research being started here in Australia...
Hi Maria Just a quick note to tell you why I think Genetic research is important. Firstly it has given us more of an understanding of TTD and is enabling us to...
