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...
Hi Maria I am herewith giving you the phone number and address of Dr: Kraemer. I hope it would be of some help to you. Chief, DNA Repair Section Basic...
Sorry to hear about your recent hospital stay and I’m sure its very frustrating being without your tools!!! Our eldest, Alexandria, had a food peg put in in...
Thank you so much to everyone that has helped me with everything , I have heard from Doctor Kraemer and Doctor Digiovanna , Sammy-Joe will have a food peg put...
Hi Maria I'm sorry to here that sammy-joe is so unwell i hope everything is going well, its been awhile since i have written my computer has been playing up...
Hello Maria, On top of Jodi’s email, I just wanted to let you know that our daughter Andrea is exactly in the same conditions as Sydney. She’s also having...
Thank you to everyone that has helped me with all my questions , I am still very worried about Sammy-Joe having the food peg put in , but all your emails have...
Hi Maria, So sorry to be out of the loop for so long...I hope by this time Sammy Joe has had the food peg put in and will be on his way to recovery. I do not...
Thank you so much for your email , Sammy-Joe hasnt had his food Peg put in yet , but will some time this week , I will let you all know how he goes , thank you...
Dear Kelly Not sure whats happened to the group messages , I havent been able to get into the management to approve them , could you please allow me to be able...
hi maria how are things? hope the operation for sammy-joe went well. i hope you are okay and taking care of yourself. been thinking of you all. hope to hear...
