Hello and happy New Years to everyone. I hope you are all doing well. We just recently returned from visiting family in OK. The boys cousin just got a new...
Hi David, I think that Cameron may have episodes of myoclonic activity as well. Can you describe in words, (the best you can) what Zechariah's body is doing...
Sandy, I'm glad to hear that Cameron is doing much better and pray he continues to improve. How long has he been in the hospital now? Does it look like he...
Hughes,David Huston
dhhughes@...
Jan 8, 2004 2:18 pm
368
Sandy and David and all, So glad that someone started this conversation. Alex definitely does this. We have always felt that it was something that he wanted...
Hi everyone, My nephew who also has ATR-X does something like this, too. He holds his breath and if I remember correctly, kind of rolls his eyes. He also...
mis ery
medmisery@...
Jan 12, 2004 3:46 pm
370
Yes Alex does walk some. He wears AFO's and has a very unsteady gait but he can walk as far as a block (with someone right next to him). He crawls well and...
Wow! I wish Jerrod could walk. From time to time, I dream that he is walking and doing all sorts of neat things. :) How old was he when he started? ... ...
mis ery
medmisery@...
Jan 14, 2004 1:54 am
372
I should have added that when Jerrod and Tommy and all these affected w/ ATR-X get to heaven I feel they will walk and run and enjoy the presence of God along...
mis ery
medmisery@...
Jan 14, 2004 2:00 am
373
Ciao sono Lucia la zia del piccolo Giuseppe di 6 anni.Vorrei sapere che etą hanno i piccoli che lei conosce, se camminano, se parlano,se hanno il pannolino,...
Kathy, Hi, I'm David's wife, Linda Hughes. I don't get on the computer at home alot. I'm on it so much at work, it's kind of the last thing I want to do when...
I personal feel like it is God who has shared these angels with us. They love to laugh, they have no fears and have the ability to love more than we have ever...
We are very blessed, indeed! ... From: David Hughes <OurHughesFamily@...> To: <atr-x@yahoogroups.com> Sent: Tuesday, January 20, 2004 3:13 PM Subject:...
Don and Ann Allen
adallen@...
Jan 22, 2004 2:41 am
377
Hi Linda, I just now read your nice email and thank you for writing. I am not able to get on the computer every day so if you write and don't hear back for a...
mis ery
medmisery@...
Jan 23, 2004 5:11 pm
378
Hi Everyone~ We had an appointment yesterday with Kenny's geneticist, and we have come to the conclusion that Kenny does not have ATR-X. He may actually have...
Roberta,
The GHN has a support group for Rubinstein-Taybi syndrome
at the following address:
http://www.groups.yahoo.com/group/Rubinstein-Taybi_syndrome/...
Hi, I have 2 adorable stepsons that are severly delayed. Stephen is 7 and is able to walk but falls frequently and his brother Michael is 5 and just started...
Hello, This email message is a notification to let you know that a file has been uploaded to the Files area of the atr-x group. File : /boys.png ...
atr-x@yahoogroups.com
Apr 23, 2004 3:35 pm
382
... We also have two sons both affected by ATR-X. Barak "Bear" is 10 years old and Zechariah is 8. We live in Plano, Texas. Stephen is ... Both our sons have...
Thanks for the responding. Your the only ones that did. I'm going to take your advise and look for a local hemotologist to test for Alpha Thalassemia. Our...
Ciao, scusate se non mi sono fatta sentire, il tempo non č mai abbastanza.Ho pensato molto a questi bambini e prego che un giorno si possa avere una...
Hi...we have a 10 yr old son Benjamin with ATRX. In the pictures I have seen over the years, Stephen and Michael appear to be be mind cases if ATRX is really...
Why have I not been able to view any of the pictures? It keeps saying I am not a member, but I thought I was. __________________________________ Do you Yahoo!?...
jasmine jones
iliketoscoot@...
Apr 26, 2004 3:08 am
388
How do you view the pictures. We also thought we were members. We have a 26 year old son with ATRX. I haven't tried to send anything but I think the wife and...
Jasmine,
I'm not really sure why you can't. I do show you to be a
member. I can't view the pictures while I'm at work due
to the block the company has on...
Have any of you had any experience with treating your boys for this problem? Both Bear and Zechariah have very short attention spans and are extremely...
