We know that this is a source of much frustration for those with a new diagnosis, perhaps of their child or during pregnancy. Unfortunately it really is a crystal ball job!
It seems that there is no correlation between the number of genes that are missing (and that can vary considerably) and the degree of severity of problems. It also means that someone with more severe congenital problems, say very complex heart defects, does NOT automatically have a correspondingly high degree of severity in other areas, such as learning and behaviour.
Possibly the thing to do is to look closely at the issues you know are there and keep a weather eye out for those that might appear.
If you have specific queries, and for people with a new diagnosis of a child, baby or during pregnancy... PLEASE get on the phone!
Max Appeal is here to support you, we have all 'got the t-shirt'. Anything you tell us is treated with the strictest of confidence. We don't have prejudged ideas and will try our best to give you the information and support you need whatever your situation.
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