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...
Hi, We have received your e-mail regarding the rare disease support t-shirts and should like to order some. Our little boy has ATR-X Syndrome and we live in...
NOEL STUBBS
noel@...
Jul 19, 2002 7:19 pm
188
dietaheij@...
Sep 12, 2002 7:47 pm
189
Dear all, I have been asked to write a book chapter on ATR-X Syndrome and I would be very grateful for any insights you might have. An area that has not been...
I have a six year old son with all the characteristics of this syndrome, but with no diagnosis so far. I would be very interested in talking with other...
Dear Dr. Gibbons, It was good to hear from you after all this time. I’m excited to hear about the book you are involved with. If there is any information...
I received your email address from some friends in the UK, their son has ATRX and I have been trying to find others with children that have ATRX. My name is...
Dear Brooks, I'm happy to talk to you about atr-x. Our son, Jasper, is 2 years, 8 months old; he was diagnosed with atr-x at 5 weeks. He is very delayed in ...
alisabeck@...
Oct 27, 2002 5:45 pm
194
Help!!!! We have had two admissions into hospital within a week recently due to Aaron's refusal to eat or drink. He was dehydrated and dripped and then sent...
NOEL STUBBS
noel@...
Nov 2, 2002 9:05 am
195
Noel, Yes, I had some of the same problems with Tommy. It's mostly when he gets the flu or has a fever, Tommy does not drink from a cup at all, we try to ...
