Welcome to my new blog about living life (and loving it, too) with 18p deletion! I am the mother of two sweet children: a little girl named Nell, who is three years old, and a little boy named Liam, who is 15 months old. My husband and I found out in October of 2016, just before Liam turned one year old, that he has a rare genetic disorder called 18p- syndrome, which is a chromosome abnormality that can cause a whole host of medical problems. The biggest commonality is that it causes both physical and mental challenges, which can present themselves in a variety of ways.
To be completely transparent, when we got the call about our little Liam, we were, well, devastated. Heartbroken. Even though we knew that he was developmentally behind in several areas, and that his physical challenges weren’t quite “normal” for his age, we never *really* thought that there could be something significantly different about our son. But when we got the call, and then began to research as much as we could about it (which was difficult, since it is quite rare), it all began to make sense to us. Over time, we began to process what this might mean for our family and our Liam, and I believe that we have now come to a place where we feel comfortable talking about it with others and exploring our lives with a special little boy that we love so dearly.
That’s why I wanted to start this blog. I’ve been thinking about it for a while, and I think I’m at a place where I can write about it and share it with you all. I want to tell you of our daily struggles and successes, our fears and our dreams, our frustrations and celebrations. And a lot of those things involve our three year old daughter, too! I hope that this blog can be a place where families who are trying to cope with the sudden news that their child has 18p- can come for information and hope, but I also want it to be a place where our own friends and family members can get a feel for what’s going on in our lives on a daily basis. 18p- is a rare genetic condition, and there needs to be more written about it. I hope that I can help others learn about it, whether it affects them directly or not, and I hope that I can help myself in this process, too.
Thanks for reading! Here’s a pic of my precious kiddos.