Hi Leslie, Thanks for taking the time to let me know about the results of Anthony's MRI scan. Aarons too shows decreased myelination. Aaron had several...
noel
noel@...
Apr 1, 2002 5:47 pm
158
Does anyone here have Denise Walker's E-mail address? There is another member who would like to make contact with her? David...
Hello Kathy! How are you? Thank you for writing. Yes, Mei is translated into May. I'm sorry. When Gerard said 'eten', 'Ady' and 'Dieta', it was probable around...
dieta heij
dietaheij@...
Apr 10, 2002 2:35 pm
160
Hi, I hope you don't mind my posting without a definite diagnosis. My son is almost 15 and has always been a puzzle. Recently I thought he could possibly have...
Hi, I'm responding to your email because I feel that we are in the same situation like you mentioned with your son. My son is almost 5 and is considered on the...
Stephen and Myra Lodge
stephenm002@...
Apr 19, 2002 9:50 pm
162
Hi, Thanks for replying. My other boys are normal too. So I suppose if this is ATR-X then we are either lucky or it a de novo defect. I suppose we both have...
Hi Louise, Yes, my son Micah does very much have the facial similarities as well. The carp shaped mouth, and very handsome features. For now, he's diagnosis...
Stephen and Myra Lodge
stephenm002@...
Apr 21, 2002 5:59 am
164
Hi, As I don't do very much of this e-mail thing I hope that my last two messages got through to the site ok. As Aaron is letting me have a minutes peace I...
noel
noel@...
Apr 21, 2002 8:09 pm
165
Hello everyone, How are you? Who know it how many child with the ATR-X there are over the world??? I like it to know it. And, have anyone pictures on-line with...
dieta heij
dietaheij@...
Apr 25, 2002 11:43 am
166
Dear families, friends, supporters and members of the disabled community: Your support is needed! My friend, Mike Savory, is walking to Washington DC from his...
Dear families, friends, supporters and members of the disabled community: Your support is needed! My friend, Mike Savory, is walking to Washington DC from his...
carrissima Dieta, mi chiamo Monica e sono mamma di Alessandro 4 anni con la sindrome Atr-x, finalmente qualcuno del vecchio continente con la stessa sindrome,...
Here's a second chance for your voice to be heard. Maybe the book was full and you would like to sign in now. Maybe you can forward this posting to your...
Dear Louise, Sorry for taking so long to repond -- I took a bunch of e-mails offline while my folks were visiting from the US and just now found them again! It...
alisabeck@...
May 19, 2002 7:23 pm
171
Hello, Email me now to dietaheij@... and nothing to dietaheij@... Thanks!!!...
dietaheij@...
May 31, 2002 2:28 pm
172
I received this message yesterday and would like to share this information about our new member. Please welcome Chantal and Kris. David ... From: Lauvers Kris...
Hello Kris, Chantal and Jork, Welcome to this group. I have a 30 yr old son who has ATR-X and a nephew who is 34 with it. We only found out about 6 yrs ago...
mis ery
medmisery@...
Jun 11, 2002 3:27 pm
174
HI, BECAUSE THIS FAMILIE LIVES IN BELGIUM MY WELCOME WILL BE IN DUTCH (SORRY FOR THE REST OF THE GROUP) Wij zijn een familie uit Nederland en hopelijk zijn...
Hello, I just want to say hello to everybody in this group. I'm very glad that something like this group exists, it means a lot to us to know that you are not...
Lauvers Kris
bn073406@...
Jun 12, 2002 7:05 am
176
Welcome, I hope we can all be of some help. Personally, my husband and I are not very active within the group, but like to respond if we think we can help....
EMorrone@...
Jun 12, 2002 3:24 pm
177
Hello again Chantal, As I told you already, there are many on here who know more about ATR-X than I do. But in case no one else writes, I will say that there...
mis ery
medmisery@...
Jun 13, 2002 11:19 am
178
Hello again Chantal, You asked about anti-convulsants. They are medications that control seizures. There are different kinds. My son takes a very old one...
mis ery
medmisery@...
Jun 13, 2002 11:19 am
179
Hi Chantelle, Kris and Jork, I have finally got around to reading my e-mails and saw yours on this site. Our son is three and a half and was, a year ago,...
NOEL STUBBS
noel@...
Jun 22, 2002 12:30 pm
180
Ciao MONICA, Ringraziamenti per la vostra lettera Sono spiacente I ho exams. Sono Dieta, ho 16 anni e vivo nei Paesi Bassi, a Ede. Ho i 2 fratelli e 1 nipote...
dietaheij@...
Jun 24, 2002 7:46 pm
181
In a message dated 6/12/02 8:06:49 am, bn073406@... writes: << told us after five minutes that he is 99 percent sure that Jork has the atr-x syndrome....
alisabeck@...
Jun 25, 2002 7:34 pm
182
... From: Yahoo! Groups [mailto:notify@yahoogroups.com] Sent: 26 June 2002 18:56 To: noel@... Subject: Unable to deliver your message We are...
NOEL STUBBS
noel@...
Jun 27, 2002 6:26 pm
183
... From: Yahoo! Groups [mailto:notify@yahoogroups.com] Sent: 26 June 2002 18:56 To: noel@... Subject: Unable to deliver your message We are...
NOEL STUBBS
noel@...
Jun 27, 2002 6:26 pm
184
Hi Noel, Aaron is sooooo cute! He looks pretty filled out to me, not that thin. I don't know what Duocal is but I have had an interesting thing happen...
mis ery
medmisery@...
Jul 2, 2002 8:43 pm
185
Hi Diete and everyone, How is your family doing, Diete? I saw an email from you but couldn't read it. :) We are doing a little better. My son Jerrod, age...
mis ery
medmisery@...
Jul 2, 2002 8:43 pm
186
International Rare Disease Support Network (IRDSN) T-Shirts Now Available The International Rare Disease Support Network has, in an effort to promote our...
