Monday, November 12, 2007
My name is Matt. My wife Sarah and I started this blog as a way to both reach out to other people who are parents of children with skeletal dysplasias and to share information that can sometimes be hard to come by. Our daughter Kaela is almost five months old and has been diagnosed with metatropic dysplasia. The rest of our family does not share this condition nor are there any cases in our known family history. It has been about six and a half months since we were given the news that our daughter would be a bit different than other children. Over that time period we have sought out hospitals, doctors, other parents and anything else that could help us understand what to expect with our daughter's development. There are only about 80 reported cases of our daughter's particular dyslpasia in the world so information about it has been difficult to find. Not until recently did we receive a verified diagnosis and a plan for care. This is our first attempt at a blog and we hope that it can serve as a conduit for other parents to find someone who they can relate with as well as a forum where they can discuss the emotions, struggles and questions that they may be dealing with.
Posted by Sarah at 10:40 PM