This is a place for families as well as patients who are looking for information, contact and support for people living and dealing with trichothiodystrophy. This group is founded by parents of children living with this disorder and would like to share and support other families living with the same. As well we would like provide any helpful information to those who provide care or interact with any persons facing this disorder. We are not doctors or specialists, we are concerned parents who want to provide the best we can for our children.
Thanks Christine Yes, Arabella sees Jim every 3 months. He is amazing! How is Talitha going? Arabella is in grade 4 next year (middle school) at Woody
Hi Megan Ask all the questions you like, it is not a problem. With Jake, when he had the surgery, the anesthesiologist gave us the option to give jake an
All the best to you guys, Megan. We will be thinking of Arabella on 17th and fingers will be crossed for fast recovery. Are you still seeing Dr McGill?
Thank you Kelly Our thoughts are with Jake and yourselves. It sounds similar to what the surgeons said will happen with Arabella. re: casts etc. They have