So here's the link for when Vinny was on the news. This was fun to look at again, it was done 3 1/2 years ago and he looks like such a baby.

http://cbs4denver.com/local/Colorado.News.Denver.2.548557.html

The articles that have been in our local paper seem to be archived and you have to pay to see them, sorry, I was going to post that link also.

Kara and Vinny

wow is it really 3 1/2 years ago, I remember when you posted it before and Vinny was so cute and the the way he was playing reminded us of us and Ben.

Is it ok to post this link on Ben's website in the uk please?

Best wishes

Sally Fletcher

Sure you can use it Sally, by the way, you're site for Ben is great. I loved looking at all of the equipment pictures. I do have to admit that his room makes me feel like a pretty lame Canavan mom! You really have him set up nicely, I think that Ben and Vinny are close in age - it's a shame that an ocean seperates us!

Kara

Hi Kara

yes I am sorry that I am a long way away from all the families whose great advice has helped us over the years and wish I was nearer other families but at the same time am glad that to my knowledge there are only 3 children with canavan disease in the UK, although I have yet to check this out properly on face book.

I hope to continue writing Ben's story on his website and when Adrian get's a chance we are going to put some little clips of our home movies of Ben on there.

I'm sure Vinny's room is great.  I got really into using sensory stuff when Ben was 6 months old so we saved and saved until Ben was 2 and also some charities helped us out with equipment which was great.  It is crazy how expensive it all is.  I know Vinny goes to school so he will get loads of opportunities there where as Ben is mostly at home so needs all this stuff here.

Great to hear from you and like you I would love to hear more about the new families and see a few more of the ones we know on the site.

Best wishes

Sally & Ben x