Daddy's First Post
I've never written a blog before, so please bear with me. I've been meaning to start a journal to keep track of everything going on for a long time. Maybe it will be an interesting read? Maybe it will just be a journal? We will see how it goes.
Liam is now 3 and a half years old. We have known for a while now that he has a rare chromosomal disorder called Kleefstra Syndrome (KS). Little is known about KS. There are less than 500 known cased worldwide. Nobody knows what causes it, how to treat it or prevent it. In Liam's case, he has a micro deletion from the long arm of his 9th chromosome. There is no family history and neither of us have the same mutation, so his case is called de novo, meaning he is the first in our family. We will probably never know what caused it, but at least we know what we need to do to help Liam.