Connection

At the end of September I posted on the parents' message board of the Luca John Foundation. I felt a little skeptical about how much good it could do because the most recent post that I could find had been put up months before, and only a handful of people had used the board. But beggars can’t be choosers, so I went ahead and left some information about myself and the blog. A little over a week later I got an email from one of the people who started the foundation, a SRPS Dad. Since we made contact he has gone to great lengths to put us in contact with other families with SRPS. We have already received a few emails, and we are expecting a few more.

At the same time that I had initially tried to touch base with others via Luca John, I also sent an email to the SRPS Family Network. Jeff found the network information in Google cache. The website for the network was (at the time) no longer up, and hadn’t been updated in quite a while, but I was able to find an email address and send a request for information. This week I got an email from the organizer, a SRPS Mom, including an attachment with stories from other SRPS families. She explained that the network is a very loose association. They collect stories and give out information when a new family is diagnosed.

It was really nice to know that we are not alone. I have been able to make contact with some pretty amazing women who have lost children to various lethal skeletal dysplasias through this blog, and I love reading their blogs to see how they manage to cope with losing their babies, but none of them have to deal with the genetic problem that we contend against. I just wanted to find someone who went through all of it: the diagnosis, the loss, and eventually the news that it could happen again.