Hi there everyone , its been a while since I have written , please accept my appologies , I have been pretty busy with Sammy-Joe as his health has been up and...
HI EVERYBODY HOPE ALL IS WELL. NOT MUCH HAS BEEN GOING ON HERE, KATIE HAS FINALLY SEEN THE DENTAL PEOPLE AND WE ARE NOW WAITING FOR AN APPOINTMENT WITH THE...
Hello: Did Katie always have dental problems, I am asking because Megan is almost 7 and her baby teeth haven't even started to loosen yet, they are however...
Maria, I also apologize for not writing lately. Between home and work, things have been very busy - but I did want to take a quick minute to let you know that...
Hi there Sammy-Joe was a late developer with his teeth and had all sorts of problems , still at 17 he still has some of his baby teeth , he had to have some...
Happy Easter to everyone in the group , I hope you all have a wonderful break and get to eat lots of chocolate Eggs . We have had a few bad days , but other...
Hello everyone , the group is a little quiet lately ? what has everyone been doing ? I would love to hear from you all soon hope you all had a wonderful Easter...
Hello Everyone, Hope you all had a great Easter. Sorry I haven't been online lately I've been a bit busy.... Having a baby will do that. My beautiful baby...
Congradulations!! What a blessing to have a new baby. Hope you are all doing well. Hope all goes well with Kimberlee's operation. The worried and waiting is...
Hi Everyone~ I am sorry that I have not written in a bit. Things, like always, have been crazy around our house!! Collin was having sun stroke symptoms every...
Julie, Can you tell me more about this pain that Collin has? Sydney has screaming spells every week or so that last for several days. We have not been able...
Hello everyone It has been a long time since I sent anything. Things have been very busy here at home, but I am always thinking of you all. Jake has bee sick...
Hi, my niece Sharon was diagnosed with this condition two years ago, she is now 42 years old and we still haven't been given too much informatition on how...
Hello Lee How are you ? thank you for writing to us , its wonderful to find that there is an adult surviving with this condition , up until now it was thought...
Hello Lee How are you ? thank you for writing to us , its wonderful to find that there is an adult surviving with this condition , up until now it was thought...
Dear Lee Did your neice Sharon get diagnosed with the photosensitive TTD ? Is her skin and hair loss worse with light exposure , please have a look at...
Hi kelly it was great to hear from you , I am so happy to hear that Jake is getting into mischief just like any other child in this group , its fantastic to...
Hi Everyone~ I am sorry that I have not written in a while. Things have been crazy... getting ready for NIH, mothers day, Teachers day at Collin's school,...
Hi Lee, Did you say your niece is 42 years old? This is the oldest person with TTD that I have seen. If this is the case I would be interested in what has...
Hi Karen, Yes Sharon is 42. She started off at a regular school but they thought it best to take her out and place her at a special school when she was nine...
Hi Everyone~ WE ARE HOME!!!! Yeah!! We ended up having to stay there an extra day because Regan came down with an ear infection. We left last Sunday on...
I am writing this from the resource room at the Royal Childrens Hospital , Sammy-Joe has been in for seven days now and will be here for another week , he is...
Maria, I am so sorry to hear this news and we are all storming Heaven with prayers for Sammy Joe. He has been through so much but he is a fighter and i am...
Hello Maria: I am so sorry to hear that Sammy Joe is back in the hospital. I wish that we could do more to help you but remember that you are always in our...
Julie, Sounds like a crazy, but exciting visit! We will be going in November, so any tips you have for us between now and then would be great - thanks in...
Hello This is Maria writing from the hospital I was hoping someone could help me to understand what we could do to help the doctors understand the procedure...
Could you call me at the hospital , my phone number here is 93456941 i really need to speak to you , we have to postpone our trip because Sammy-Joe isnt well...
Maria, I am sorry to hear that Sammy-Joe is not well. Sydney has a feeding tube and has had it since she was about 3 months old. For her they did an open cut...
