When we first learned about Aubrey's diagnosis - we had the privilege of finding another family in the Omaha metro that has a 7 year old daughter with Angelman Syndrome. Her name is Delany and she is a true inspiration for us. She is walking, potty-trained, and is working on mastering a Dynovox(computer device that allows non-verbal children to communicate). My eyes watered when her mother told us she takes dance class!! For those that know my love for dance - - you can only imagine how happy I was to hear this.
Anyway, it's been so nice to hear their story and things from their perspective on everything. We went over to their house last night to start planning for the 2009 Angelman Syndrome Walk. We'll be hosting one in Omaha for the first time next May and there is a lot of work to do to get it up and running.
As we were talking and brainstorming all our ideas Aubrey and Delany were playing - it was very nice to seem them interact. We also had the opportunity to meet Delany's maternal and paternal grandparents. They were so smitten with Aubrey - - you could tell that it brought them back to 5 years ago when Delany first got her diagnosis.
It was a nice night and I really look forward to spending more time with them in the future.
That's all for now...
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5 comments:
Good job on your blog, very well written,and informative. The photos are fun to see too. Love, your Mom.
You rock!!
I'm so glad you got to meet Delaney! I've met Delaney twice now and she was a HUGE inspiration. That's awesome that you live in the same city. Beautiful website, I look forward to more posts.
Erin, Mom to Maggie
ur so fortunate and lucky to have another 'angelbaby' so near by!! I am totally jealous :)
It sounds like a great time had by all and I wish you all the luck with next years walk!! I hope to actually particpate in Iowa's then.
Tami, Harli's mom
We enjoyed getting to know your family as well!! You're right, seeing Aubrey is just like seeing Delaney at that age - brings back a lot of memories!! We can't wait to see you all again and Delaney promises to share her toys better next time!!!
Kerri VB & family!!
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