... was ... Ruth, my name is Pat. I also live in Michigan. We have a 33 year old son with ATRX. I am on the west side of the state. Where are you. I haven't...
My name is Pat. I have been a member of this group for a while but not a very active one I'm afraid. My husband Dick & I live in Michigan. We have a 33 year...
Pat, Thanks for sharing with the group. Our boys have been given to the world to teach us. While they do require a tremendous amount of work and dedication,...
Hi Allie, My son is 11 and has atrx but has limited speach and walks but also is in nappies. Jack goes into hospital to have a barium meal test- scan of the...
Hi Yvonne, Nathaniel will be 5 in Feburary. His ATR-16 is definately realated to other problems. He doesn't have the top part of his 16th chromosome, it's...
Hello, This is kind of an odd question, but I noticed that in one of Allesandro's photos he is on a great sled! I would love to know the name brand to see if...
HELLO! oh my gosh, I'm so excited to meet someone else who lives in Michigan who has delt with ATR-X. We live in between Lansing and Flint in Shiawasse county....
... husband ... a ... kept ... we're not even that far from each other. When Tim was born nearly 34 years ago they didn't test for most of the things they do...
Happy New Year to everyone. My son Charlie has had a ng tube since he was 4 months old,he does take solid food sometimes, but not very much and not very often,...
... had the same fears for Tim when he was going to have his nissan but it was a miracle and he really started to thrive after having it. Good luck! Pat ... ...
Hi David-its Jacks Mum, I have a question for you? Jack had a berium-meal swallow to see what was going on in his stomach. Jack has stopped eating at school...
... refusing to eat on a variety of occasions over the years. Sometimes it's related to illness but sometimes there is no apparent reason. We insert a feeding...
I was wondering how many of your sons were oxygen dependant? How long where they on it and how did you get him off of it? I would love to get Travis off of it...
I was so amazed when I saw the pictures of these boys. I kept telling everyone that they could be brothers. and then when I watched David's video. Travis is so...
Hi everyone its so nice to find other parents who have kids with ATR-X Hope to be able to get advice for the pinching behaviors. We live in Oregon and we dont...
Hello! My name is Nichole and Im new to the group. My son Kaleb is 11 yrs old and has ATR-X. He has had a G-tube since he was 9 months old before that he had a...
... was ... Hi Ruth my name is Nichole my 11 yr old son has ATR-X and you are in for many blessings as well as hurdles. There are no easy answers but they are...
Nathaniel was on oxyegen til he was about 1, then it was only during sleep. Eventually he only needed it when he was sick . Thankfully he has been totally...
... get ... Hi, my son Charlie was on oxygen 24/7 until 18mnths, then was just on overnight until just after he was 2, he has now been oxygen free for 4 mnths,...
... get ... Hi Ruth, my name is Nichole. Kaleb was on O2 for about a year off and on. It wasnt hard to take him off. We were lucky. We are now wondering about...
... take ... before ... he ... his ... this ... open ... pulmonary ... Kalebs Nisson was the best discsion we made. He has become so much stronger and...
... over ... trunk ... happens ... tell ... ( ... Hi tammy Kaleb was 4 before he walked he was around 1 1/2 when he sat he is non-verbal except for his noises....
Hi Nichole, my name is Allie. My son will be 5 next month. He sat at 14 months, he crawled at 10 months and walked at 22 months, he said his first word at age...
Lane, 16mos was hospitalized 4 days for pneumonia this year. Four days later he was hospitalized with RSV. He is still recovering but he is home now after...
Hello, My name is Tanja and I'am a stepmother for 10 years old ATRX- boy named Ville. We live in Finland. Ville has not learnt to speak verbal language...
First, I would like to start off by saying "whew! We're not alone!" Our 10 month old daughter (complete physical female genitalia) was diagnosed with ATR-X a...
Hello everyone, My name is Tammy and my son Miles is 14 months old. I am currently a member but have not posted in a while. Miles weights in at about 17 pounds...
