Welcome to all our new members I would like to give our new members a chance to introduce yourselves and also for our existing members , please re introduce...
Hi Sharron, Brianna sounds a lot like my daughter Tara. Tara is now 13 years old, she also wears the hearing aids and has the FM trainer at school. This past...
Hi Karen We live in Vermont just over the border from New York. Brianna just lost her first tooth and was so excited about the tooth fairy coming. She seems to...
Hello all: I am sorry that I haven't written in some time. Things aren't going very good for Megan right now. She is losing the ability to swallow so we go...
hello Katie , I am crying as I read your email , I am so sorry that you too are going through this , please know I am here for you in any way I can be , please...
Dear Katie, I can't imigine how you must feel.. Please know that you are in our thoughts and prayers, a parenet is never ready to lose thier child. Please...
Hello Ladies, I know that I do not write a lot and I am kind of a quite member of the TTD family because we lost Makenna so early. I just want you both to...
Hi Sharron, Sorry to be so long in responding, we have a lot going on with summer vacation and all. Both of your daughters are beautiful! Tara was knocked...
I too, am crying as I read you post. I'm mentally sending you hugs I can't give you in person. I've held my breath for so long, worrying about the future(our...
Sammy-Joe is going into hospital tomorrow to have his food peg changed into a button , I hope and pray that he doesnt have to stay overnight or longer , I am...
To Melissa Thank you so much for your email , my heart is always with you , I think of you everyday , my heart goes out to you everyday , whenever I think that...
Please welcome Tylers family to the group i recently joined the TTD support site. i wish i would have sooner. i have a 10 yr old son named tyler. we found out...
I am so sorry that things have taken a turn for the worse. I know we all think about the future with a guarded hope that we will have more time and not less....
Hello everyone: Thank you all so much for your thoughts and prayers for my family. Megan is in the hospital right now, she had a feeding tube put in. Last week...
Hello all , We are out of Hospital now and back home , Sammy-Joe had his peg replaced with a Bard Button and I am learning it all over again , just when I was...
Hello out there to all you T.T.D family's.I just got some wonderful news.Matthew is a little brother to Angela but now he is going to be a big brother.I am...
I am glad that hear that Sammy-Joe is doing well. I am inspired by each of these kids!! Collin is doing pretty good. We had to have a nurse come out yesterday...
Hi Katie~ My heart is breaking for you. I know it is a fear that we all face. Every time Collin gets sick I worry if this could be the thing to take him from...
Hello Katie and Megan I was just wondering how things are now , I have been praying very hard for you both and am quite concerned because I havent heard from...
Kristy~ That is great!! congrats!!! I just have to say Collin's little sister b-day is ... April 26!!! That is just to cool! BIG HUGS, Julie ... From:...
Hello, My name is Vira and I have a 5 year old that has trichothiodystrophy. She was diagnosed when she was a year old. The condition has affected the growth...
That is wonderful news , congratulations Kristy and Dale and of course Angela and Matthew , please know you are constantly in my prayers , please keep us...
Welcome Vira to the group , Usually with TTD the hair is one of the main features of the illness , and whenever exposed to light it will break off weaken and...
Hello all: Well Megan is finally out of the hospital, what a long two weeks. It seemed like such a simple procedure NOT... Megan didn't do well at all she was...
Hello Vira: My name is Katie and my daughter Megan is 7yrs old. Like your daughter Megan had dry, course hair and very dry scalp. She had fever induced hair...
Hi Vira, My name is Jerry Lopez and very surprised to see another Lopez in the group. My wife Bonnie and I have two children with TTD, Jerry Jr., 11, and a...
Glad to hear things are getting better. You should check on the type of pump that you get for the feeding. Sydney has a portable pump that is very small and...
Hi and welcome to the group! I’m Kasie Appel and my husband and I have 2 daughters, both with TTD. Both have the hair and skin issues associated with the...
hello everyone, we had tyler in for a pre-op physical on tuesday and he has finally hit 40lbs. it has been a long road to get there but he has done it!!! we...
Hello everyone It has been awhile, but I have finally found some time to sit at my computer uninterrupted. Things at home are quite well. The newest addition...
