ATRX syndrome support group - Mothering Forums

 
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#1 of 4 Old 09-26-2014, 01:37 PM - Thread Starter
 
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ATRX syndrome support group

Hi all,
My 1 year old boy was recently diagnosed with ATRX syndrome. I will love to contact parents with children affected by ATRX syndrome. I have so many questions.
Thank you!
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#2 of 4 Old 10-19-2014, 01:36 PM
 
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Hi Gabriela,
My husband and I are in the same situation as you. We have a 2 year old boy who has also been diagnosed in the last few weeks. There does not seem to be many people or much information out there as it is quite rare. How are you getting on?
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#3 of 4 Old 10-22-2014, 07:05 PM - Thread Starter
 
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Quote:
Originally Posted by T Cor View Post
Hi Gabriela,
My husband and I are in the same situation as you. We have a 2 year old boy who has also been diagnosed in the last few weeks. There does not seem to be many people or much information out there as it is quite rare. How are you getting on?
Hello,


Sorry for the late response, I didn't check the forum recently. You are the first one to reply to my post in weeks! You are right, ATRX is a very rare syndrome, there are about 200 cases reported in the world. Here is the link of the website of Dr. Richard Gibbons who is studying ATRX syndrome in UK. http://www.imm.ox.ac.uk/atr-x-syndrome-information
You also will find a lot of information and support at the ATRX group at yahoo. I'm already a member.
https://groups.yahoo.com/neo/groups/atr-x/info
Our son is doing fine so far. He started physical and occupational therapy a month ago and we feel heartened to see that he is responding very well. He is getting more active and stronger, and he is almost ready to roll over. We have a long list of specialist that are taking care of his medical issues: gastroenterologist, urologist, endocrinologist, ophthalmologist, neurologist...
How is your son doing?
I will love to talk with you through the ATRX group at yahoo.
Hope your son is doing OK.
Best,


Gabriela
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#4 of 4 Old 03-27-2016, 05:30 AM
 
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Hello, I have 2 boys with ATRX-syndrome, and I'm looking for families in the same situations.. My suns are 6 and 4 years old and we're from Hungary. Here they are the only ones in the whole country, so here the people, the doctors don't know anything about this syndrome... So I would be happy if I could join the group.
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