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Oct 11, 2017

How to help

1 comment

Hello, My nephew has been diagnosed with ctnnb1. How can family be most supportive to the parents? I would love to hear your honest feedback of what to do and what not to do?

Oct 16, 2017

Hey great question! I think the key is compassion NOT sympathy. Our CTNNB1 kids are awesome and do not need to be treated awkwardly or super sensitively, I would get to know your nephews quirks and difficulties, the more you know the less time you will spend focused on what he can't do then what he can. For me certain social situations are very hard, and although I do force myself to attend I will often feel super drained- as much as we do love hearing about other kids achievements and get that ALL parenting is hard please try not to complain (excessively) about things we can only dream of our little ones doing... hmm no doubt if your asking these questions already your one step ahead of most people and will be a fab person in your nephews life! :)

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