--- In sticklersyndrome@yahoogroups.com, "dspigener" <dspigener@...>
wrote:
>
> Hello, my name is Amy and we have a four month old daughter that
> was diagnosed with stickler syndrome. I would really like to talk to
> someone who is or has gone through this.
> >
> >
>Hi Amy, my name is Lisa, and i have a little girl who is now 4 years
old, who has Stickler syndrome and Pierre Robin sequence.
Would be happy to chat to you about anything, Kaitlyn had to spend the
first 3 years of her life in hospital, but is home now and doing really
well. She is still tube fed and we have been told that she probably
always will be, and she suffers with her eyes and ears. And has
arthritis in both her knees. I find that i have learnt far more about
medical science thani ever wanted to, but know that there is still an
awful lot to learn.
Lisa