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...
Hello Irene , Katie and Denise and everyone in the group Things are not doing to great for Sammy-Joe , he is still finding it difficult to adjust to his new...
Hello Everyone, The group seems to be quite quiet lately but I hope that all is well with everyone. Maria, I am glad to hear that Sammy Joe is home from the...
Hello Katie , Teething seems to be a big problem in children with TTD , either they have overcrowded mouths or delayed growth of teeth , or problems where the...
Dear Maria & Family I'm so sorry to hear that Sammy Joe is not doing well. I will pray for all of you. You have been so strong for your family, I hope that...
Hi Katie~ I am sorry that you are having some problems with sweet little Megan. Collin just lost his first baby tooth and his permanent tooth is coming right ...
thank you Karen and Tara , we are very grateful to God for everyones kindness and beautiful thoughts , Sammy-Joe loves it when I read him all the messages and ...
Latest on Sammy-Joe Sammy-Joe has had surgery for a food peg as he has lost his ability to chew and swallow after the stroke. We understand and know that his...
Dear Dr Freeman Thank you for getting back to me. I contacted some of the specialists who had seen Sammy Joe when he was here. Dr Steve Holland is an...
Hi Everyone, How are you? I hope this finds you well and happy. Its Brooke here, on behalf of Maria. Maria and Sammy Joe are now home however are feeling sad....
Hi Julie: Thank you for all of the information, it is pretty scary. I have always read everyones letters and comments in the group and was always very...
hi liistro family im just writing to find out how sammy joe is doing? if christian wonts to talk to denise again she is happy to talk to him. i hope everyone...
PostPalsPost Pals PO Box 278, Leatherhead, Surrey, KT23 4WN UK Vikki George (Correspondence Coordinator) Hello, Post Pals is up for an award but against huge...
Hello Everyone , Sammy-Joe is doing ok , except he was fighting off a chest infection all week ,he still has a runny nose , he is coping with the Polly foodpeg...
Maria: I would love to have Megans picture on the brochure, unfortunately, me being the computer idiot that I am the one that I am attaching is the only one I...
Hi Maria I am herewith attaching a photo of my son Yashas Nagananda who is diagnosed with TTD. We are basically from India and he was diagnosed with TTD at...
Hello everyone . If you are interested in having your child featured on the information brochure for the Trichothiodystrophy support network I would like some ...
hi katie i looked at the photo of megan and was wonting to know what age was she when this picture was taken. i couldn't believe how much she looks like my...
Hi Sunitha Thank you for your email , I love the photo of Yasha s , welcome to the group , I hope we can help you in many ways to find support , have you seen...
Hi everyone I would also like to have some happy and positive quotes on what its like having a child with TTD that I can add to the brochure or positive...
Maria Not only our family, but our whole community is a better place because Megan has touched so many lives. Through her precious smile and determination she...
hello Irene: Megan was almost 5 in that picture. Her looks and size haven't really changed in the past few years. She has maintained her hefty 19lbs =) but...
Hi Maria Thanks so much for the reply. I regularly visit Sammy-Joes Webpage. You have set it up wonderfully. Yashas older brother's name is Shreyas Nagananda. ...
Hi Maria I have been reading some of the messages in the group in the last few days. Liam is my grandson and he is at present in Starship Children Hospital in...
