When my daughter was diagnosed with Cornelia de Lange Syndrome (CdLS) ten years ago, we were fortunate to be in the age of the “information superhighway.” Our home computer, which up to that point had been a very large (and expensive!) paperweight, became my lifeline -a portal into the strange new world into which I’d been so unexpectedly deposited –mom to a child with special needs. Armed with a phone-line and screeching modem I was able to instantly connect with other families of children with CdLS. Technology, what a miracle!

Through the years via websites, listservs, message boards, emails, chatrooms and Internet messaging we have all shared our lives and our love for our children and spread awareness of this little known syndrome. Now, through this new venue (blogging!), I hope to continue sharing the journey and reaching out.

For more information on CdLS please visit the CdLS-USA Foundation website.