Lived Experience Factsheet

This factsheet has been put together to summarise advice and suggestions from parents of children with trisomies 13 and 18.

To download the factsheet, click here.

Advice and recommendations from families living with trisomy

“Lewis’s favourite items are his iPad, Xbox, switch , I phone - see the theme!  He also likes LEGO!!  

I think my biggest piece of advice for parents is take each day at a time.  For those more like Lewis it’s a case of enabling them rather than disabling them and letting their disability define who they are.  Go with your gut, you know (your) child!  While I say take each day at a time you also need to have in your mind what your future plans are ie education, supported living, etc.”