6 month son has moebius syndrome

[NatB2408]

Hi there, yesterday we got the news we were expecting from our neurologist, my little boy has Moebius syndrome. I'm relieved to finally have a diagnosis and we have a lot of appointments in place with a lot of specialists now but I'm really just looking for some support. Before my son, we'd never heard of anything remotely like this. I'd like to hear of other people's stories of how they've found it and how their children developed and if they are older children, how do they feel about it?

Also the nerve transplant that they are offered at a later stage, did you opt for it ? This is a debate in our home at the moment as to whether we make the decision when offered or whether we leave it until he's at an age where he knows what's happening and can make the decision for himself? Any information would be really appreciated.

[lorraine-t]

If you send an e-mail to [e-mail] we can put you in touch with other parents/carers.

[NatB2408 in reply to lorraine-t]

That's great thank you.

[Moebius]

How is your son doing now?