Fragile x syndrome

mummyroysof3

does anyone on here have a child who has this?

aliasojo

That was one of the things my eldest was tested for but it was ruled out.

A lad on his Father's side has this condition. Big lad, gentle giant type iyswim.

mummyroysof3

my youngest son has been diagnossed with this at age 3, we are waiting for genetic councelling and this has hit me really hard, struggling to deal with it sometimes

aliasojo

mummyroysof3 wrote: »

my youngest son has been diagnossed with this at age 3, we are waiting for genetic councelling and this has hit me really hard, struggling to deal with it sometimes

I can understand that. This isn't the future you were expecting for you or him.

He will just have a 'different' life to the one you were likely imagining for him. How different depends on how greatly (or otherwise) he is affected.

I expect it's all very raw just now but it will soon become normal and your feelings will ease I promise.

I was never able to get a firm diagnosis for my eldest, despite one of the leading geneticists in Scotland (at the time) taking on his case. So our future was very much an unknown quantity, at least you have a firm diagnosis and can educate yourself on what the issues may be for him.

The lad I mentioned earlier had quite a normal life considering his difficulties, so don't be automatically assuming the worst. He may only have mild learning difficulties, it doesn't necessarily mean he will be severely affected.

Even in the worst case scenario, there will be help and support out there for you and him.

Try to stay strong. Whilst you will no doubt have difficult times in the future, your emotional reaction will pass.

I expect you will have been given info about the syndrome but there is a Fragile X Society which has a lot of useful info.

http://fragilex.org.uk/

(Sorry if you already know about it.)

niklepic

Fragile X was one of the conditions my son was tested for before his diagnosis of Duchenne MD at age 5. I don't really know anything about Fragile X other than the brief google search I did at the time but I do know how it feels to receive a diagnosis that hits you like a hammer. All I can suggest is to join as many support groups as you can and take things one day at a time and don't look ahead too much- I've wasted so much time in the last two years (ds is now 7) worrying about a future I can't change x

Picklesticks

Hello, I have a four year old boy with fragile x and a daughter who is a carrier only but does have developmental delay.if you want to contact me please do it would be nice to hear from someone in a similar situation.we found out last year,still can't believe it sometimes.