ATRX-Syndrome

[carer58]

My son is 16 years of age, but was diagnosed at the age of 7 with ATRX-Syndrome. I have been told it stands for Alpha Thallassaemia Mental Retardation on the X Chromone and that it is a very rare syndrome.

I was just wondering if there are any other parents out there that have heard or had any dealing with this.

I am in the UK

Thanks

Irene

[AdinaL]

I moved this over to Special Needs Parenting to see if anyone here has any input. 

[marie2011]

hello my name is Maire and i have a nearly 15 year old brother with A T R X .how bad does your son have it ,i am also a carrier of A T R X as well .i have 2 daughters and i am now  8 weeks pregnant with my 3rd child ,i am a week away from having my blood test to find out what sex my baby is .there is  so many children with this condition ,i remember when  my brother was only like 3 or 4 ,there was only 1 other child in the UK i knew of that had the same condition as my brother ,my brother has it quite mild but does have reflex problems and autism.The doctors found out her had A T R X  when he had meningitis when he was 1 years old ,where abouts in the uk do you live ? we are from glucestershire .cant wait to here from you .all the best ,marie and family x