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Recently Diagnosed


Words of advice from our families

Don't take the doctors word as gospel.  Lots of our little ones have proved them wrong

Remember they are still your wonderful little person.  The syndrome does not define them

Lean on people, they want to help

Try not to Google

Keep Calm and Carry On

You will cope even though it doesn't feel like it right now


The next steps when you are ready

Read the After Diagnosis leaflet from Unique

You can find it here

Come and find our facebook page and chat to other families.

Read the 1p36 information

leaflet from Unique.  


Take your time

*Due to the nature of the discussions, this is only open to the family of children with 1p36 deletion syndrome. Please make sure your Facebook settings are set up to receive messages, as one of the admin team will need to confirm your details before approving you.