Hi, my name is Ajay60!

Ajay60

hi , we recently got a diagnosis of a very very very rare disorder for my 16 month old grandson.

Its very hard for us all to compute . I’m finding it all rather overwhelming.

I have three other granddaughters , four step grandchildren and two great grandchildren also .

Rosie_Scope

Hello @Ajay60. Welcome from me too! It can be a big adjustment when you first get a diagnosis through, I hope you and the rest of the family are coping okay and your grandson is doing alright.

Please feel free to take a look around the community and join in wherever you like. I hope you'll find some support and advice here 😊