I am not sure how to start this blog. I wanted to start it to document some of our joys and struggles with out daughter who was diagnosed with a rare genetic disorder: Partial Trisomy 16p. When we registered with Unique, an organization for people with rare genetic disorders, they gave us a list of 2 people who had a very similar disorders. That was it, that is all they knew of: 2. Another website Trisomy16.org, had some stories of children, but none were as mild as Keira. And they hadn't updated there site for years!
We didn't have much information, and we still don't. The doctors can't tell us anything about it, though the follow her Keira closely. No one knows what to expect.
But that doesn't tell you about our almost 3 year old bundle of joy. She has an innocence that is interesting to see. When she is happy, it overflows through her smile and her eyes to all those around her. When she is angry, her face changes so much that you can hardly recognize her beautiful features. She is incredibly intelligent, catching on to things that her older sister (who is 4) doesn't quite get. But she has a hard time speaking and can only say a few sentences with a handful of words.
As the weeks go on, I hope to update you on the past and the present. I hope that if you are searching for clues about your child, you will keep trying. And I hope most importantly that you will love your child all the more for who God created them to be and for giving you the special challenge and extra joy of having a rare child.