When you have a rare condition [and/or a child with a rare condition] the internet is such a powerful tool for finding others with the same condition. That can then be an amazing source of information, support and comfort because having a rare condition can be quite an isolating experience.
As Archie's broken a few bones recently I e mailed an e mailing list for people with Kniest/SEDc and asked if this was a common occurance, seems like it is. Although I'd rather he didn't break bones, knowing that it is 'normal' for some Kniest children [wasn't a regular occurance for me I have to say] was reassuring.
I've also come to realise through belonging to that group how lucky we have been with Archie in terms of him being able to walk, as there are other children with Kniest who can't walk or who use wheelchairs. I'm not sure how much that has to do with the fact that we never contemplated the idea that Archie wouldn't walk, because I can walk. And I wonder how much can your expectations of a child's development can influence their final ability?
