P has a diagnosis of 8p23.1 duplication syndrome, but they also think she may have Angelman Syndrome in addition to that. We'll keep testing every couple of years and see if it's ever confirmed with better tests.
Today was the second annual walk to help find a cure :o) We missed it last year because it's also the same weekend that we have A's dance recitals. Last year I danced in the Mom's group so I also had to be there for it. Today she went to her recital with the Grandparents while we went to the walk, and then tomorrow Hubby and I will go to her second recital. Busy weekend :o)
The walk was at a beautiful park so I got lots of great pictures. It was SO COLD! It was 38 degrees when we left home, and the wind was about 20 mph in addition to that. I'll bet the windchill was about 20 degrees! We had to haul out the winter coats again. I'm sure glad we did. We also had to dig out the bag of blankets that I keep in the van during the winter.
Thanks to everyone that organized the walk and thanks also to those who donated to help find a cure. If you would like to donate, you still have time. Just click on P's donation page on the right side of of blog. Thanks a bunch!
Here are some pics:
The frozen 4, lol.
Had to add me :o) A ponytail and windblown bangs - gotta love pictures, lol.
Ms. P and her headband, constructed out of her Angelman scarf, to keep the wind out of her ears :o)
I need to get me some of them there pink trees :o)
Dr. Joseph Wagstaff. One of the most remarkable people and researchers ever! He passed earlier this year when he fell while rock climbing. He's greatly missed. He loved our kids so much and was determined to find a cure for Angelman Syndrome.
Ms. A and her flowers that her Grandparents got for her recital. Yes, she was freezing to death :o) but inside pics dont' look so well when it's so bright outside.
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