While checking in on some of our friends this afternoon, I caught a story that just broke my heart. It's an awful story about the loss of a little girl with Down syndrome, a seemingly healthy almost 2 year old. Her death was unexpected and sudden, and the cause leaves me to believe more of us need to be aware of this issue.
You may remember I posted a while back that Chelsea had to have an xray of her neck before beginning gymnastics. Children with Down syndrome are prone to Atlantoaxial Instability which can be very dangerous and with activity can put them at harm for paralysis or even death. Deborah at Sunflower stories wrote about Rhiannon's sudden death, and about the new revelation that explains what happened.
Clearly after reading these entries, you will understand why our kids must have their xrays done. Had I known this was even possible, I would have been much more cautious of Chelsea before her xray. She is so extremely active. I have been told that things aren't developed enough in kids under three which is why they don't do the xrays sooner. It is still scary to think what can happen in the meantime.
Saturday, March 14, 2009
Atlantoaxial Instability and Down Syndrome
Labels: AAI, Down syndrome
Wednesday, March 04, 2009
Traveling Afghan!
We are participating in sort of an around the world journey ... The Traveling Afghan. Families with children with Down syndrome are coming together to share their stories and lives through this very special afghan. A fellow blogger friend has made the beautiful article and has already sent it on it's way to a few families. Eventually it will end up here in the land of OZ and we will take pictures and journal our day. The goal is to hit as many countries as possible and all 50 states! So far they have quite a few countries involved, but we are still needing more states to participate. One state I noticed they're missing is Missouri and since I know some of you KCMO people read here I was hoping one (or more) of you might like to join in the fun! Here is the link to the website where you can read more about it. Also, I have to share pictures of Chelsea's buddy Mayson in Iowa who has already received the afghan. Isn't she adorable?!


If you want to see which states & countries still need participants, click here.
I see that Alaska is still available, I think we should contact Sarah Palin and see if she and Trig want to participate!
Labels: Down syndrome, T21, traveling afghan