When Ali’s doctor told me the results, he said that he was sorry that she had Costello Syndrome but that he was glad that it wasn’t something worse and although some days it’s easy to forget, we know that yes, it could have been so much worse.

I can’t believe it’s been a year already since we got the official genetic diagnosis!

Ali is doing really well. She can now sit unassisted for quite a while and she rolls all over the place to entertain herself! Tomorrow we have to go to Edmonton to do a hearing test because Ali failed the last one. It seems like there’s always something to look into. Ali also recently had an endoscopy procedure done to check for malignant tumors of the nose, throat and neck. She took it like a champ and the results were normal. We’re going to be doing endoscopy once a year to help to reduce the risk of advanced stage tumors in her ears, nose and throat.  This gives me a bit of piece of mind, just a bit, because the tumors terrify me.

Two weeks ago Ali had her press debut. Our local news paper did a full-page story on Ali and since then we’ve gotten a lot of supportive comments from those in the community that weren’t sure what was going on with Ali until they read the article. I really prefer when people ask questions or say hello rather than staring at my daughter. The staring hurts my heart.  I’ve had a lot of people tell me that I’m an inspiration, that makes me a little uncomfortable. The way I see it, I do what any mother would do. Ali is the inspiration! She’s amazing!

Thanks for reading!