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?
3 comments:
Hi Emma,
My name is Amy. I have Kniest and live in the US. I recently discovered your blog. I think expectations do play a big role and also the family's attitude torward walking. Although I have met children with severe Kniest who truly can't ambulate well but its rare. A lot of it is encouraging the child to walk and excercise and just bulid strength.
Oh by the way, I broke lots of bones as a kid especially during growth spurts. If you haven't already consider Ca and Vit D (over the counter) with your doctor for him, I know a lot us have ended up with osteoperosis or the beginnings of it.
Hi Emma
Just popped by to say Happy New Year to you. Hope 2009 is happy, healthy and full of surprises!
Shanta x
Emma,
I am also part of the Kniest/Sed forum. My son (15mo) has Kniest. I am not a regular contributer but I enjoy reading up on the issues presented. I have also been so thankful for the answers I've received when I've posted a question.
I couldn't agree with you more when it comes to expectations! My husband & I have always said he is perfect just the way that he is. He is capable of many things and he will accomplish exactly what he needs to accomplish. Although his path in life will be a bit more challenging than his brothers, he has the personality to make up for anything he lacks.
Thanks for blogging!
Post a Comment