Hi Megan, Kelseys Mum here. Kelseys main problem as been constipation, but sometimes she gets very loose. Last time was when she had to have antibiotics for an...
I would like to wish each and everyone of you a Merry Christmas and a Safe and wonderful New Year , please remember that we love you all and think about you...
Hi Dear Friends and Family We Wish You all a Very Happy Christmas and a Very Happy and Prosperous and Healthy New Year. May All Your Wishes come True. Best...
To all of our TTD families, have a safe, relaxing (as much as you can!), and enjoyable holiday - and a great 2008. I've attached a pic of the boys from our...
Merry Christmas, and a Very Happy New year to everyone! Love Karen ... From: Maria Date: Wednesday, December 19, 2007 9:03 am Subject: [TTD-support] Merry...
just a quick note to wish everyone a safe and happy holiday season. hope the new year bring joy and happiness. another quick hello to kelly and jake!! it was...
May the New Year bring lots of Joy and Happiness and love your way Kelly cant wait to hear from you about the trip ,,please tell us all you have learnt and...
Bonne année à tous et merci d'exister! Ce n'est pas évident, ici au Québec, d'avoir un enfant ayant le syndrome TTD, car peu de spécilialistes peuvent...
Happy New Year and welcome to our group , I am gald you found us . I dont speak French , but we do have a family that does in our support group I am sure they...
Hello Maria and Kelly, I'm sorry that i didn't respond any sooner.To be honest, i'm not often on this forum. I'm Daan, mom from undiagnosed mentally and...
Hi Maria and all the other moms and dads, I thought that i did sent a mail before, but i can not find it back anywhere. Honestly, i'm not often on this...
Hello, I'm new to the group and still working on finalizing a diagnosis for my daughter. She currently has two presumptive diagnosis: Mitochondrial Disease and...
Hi Heather Thank you for contacting me to begin with , I hope all of this helps u and ur sister to understand Tylers condition and remember you are no longer...
Hi Lori Welcome to the group , yes I do believe that u need to ask to have ur child diagnosed or examined for TTD , especially after describing the hair , my...
Hi Heather, My name is Michelle, My daughter Madeline has just turned twelve years old, she has the non photosensitive form of TTD. Madeline was diagnosed at...
Heather, My son Sean is 11 and has the non-photosensitive TTD. He was diagnosed at age 5 after trying to get a diagnosis since he was 1. I'd be happy to share...
Hi Lori, my son James is 11 and has TTD. As a young child he always had really sparse hair and it would fall out all of the time. We used to keep it short and...
Hi Lori, My daughter,Kim is 13 and has TTD. She was completely bald until around 5years old but it has slowly grown. Now she looks great and has enough hair to...
Hi Heather, I'm Ronda and I have a daughter, Kimberlee who is nearly 14 also with the non photosnsitive TTD. Kim was diagnosed at 5 years of age. She has very...
Hello everyone I know I haven't posted a message for such a long time , i'm always on here seeing how everyone is doing ,there are so many new familys its...
ITS OFFICIAL AND WE ARE READY TO LAUNCH THE FOUNDATIONS VISION IS "Helping to Create Better Lives" The Friends of Sammy-Joe Foundation is having a Fundraising...
To all the families in Australia that have children with TTD , CS AND XPD please think of something you may need for your child as the Foundation is set to...
This is awesome what you are doing Maria! We are so proud of you!!! Even though we can not be there please know that you have our support and love!!! You...
Thanks Julie I am so sorry that you are having so many problems with the system , unfortunately the system does literally suck in these areas , especially to...
... Hi Maria and all the other moms and dads, I thought that i did sent a mail before, but i can not find it back anywhere. Honestly, i'm not often on this...
- Hi Daan Thank you so much for all the information , it is most helpful to know I have now found another 5 children in Victoria Melbourne that have Cockayne...
Hi Maria, Thank you for responding my mail. I'm glad if i can help you and the CS family's that you know. The CS-share and care group is really a wonderful...
Hi TTD, I set up a Facebook profile with my pictures, videos and events and I want to add you as a friend so you can see it. First, you need to join Facebook!...
