We were given custody of Christine 4 1/2 years ago, but it seems like a lifetime...we knew there were issues when we got her, but never did we understand what path our lives would take. She had a diagnoses of ADD but I never believed that, so we fought and we researched and read and asked and begged for doctors to take another look and finally we ended up with a Genetisis in Mayo Rochester.
In October 2012 she was diagnosed with Microduplication 15q, (Chromosome 15q Duplication Syndrome (Dup15q) is a clinically identifiable syndrome which results from duplications of chromosome 15q11-13.1 These duplications most commonly occur in one of two forms. These include an extra isodicentric 15 chromosome, abbreviated idic15, or an interstitial duplication 15. When the extra genetic material comes from the paternal chromosome a child may have normal development. However, when the duplicated material comes from the maternal chromosome, developmental problems are often the result.) For more info go to http://www.idic15.org/Chromosome-15-duplications.html. So once again challenges abound and we are now at a point where she is no longer going to a regular school, because it is to stressful on all involved. And as we prepare for the future the best we can, we find joy in the little things everyday and don't take a moment for granted, our next adventure we have begun is a trip to Florida with "Make a Wish" and we will be swimming with dolphins and a whole lot of other things. We are all excited but I worry about details which we don't know because they love surprises at MAW. So i prepare the best we can with lots of great crafts and ideas for the trip. I have made games and i'm working on making travel journals for both kids and gifts for the passengers on the plane who are so lucky to get to sit by us. So soon I will post a complete photo journal of all the things i'm working on.
and once again our lives move along the journey...
2 comments:
Hey Suszi! Thank you for sharing your life with us out here in the webs! Knowing you, and your wonderous daughter, I appreciate the chance to understand what you're going through a bit better. I think that your daughter is, despite her issues, a wonderful blessed gift to the world. I think she's a pretty terrific kid, regardless of all the problems she deals with every day. :) And I happen to think that you're a pretty amazing mom, too. :D
Thanks Bob you and Robin are great friends
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