Friday, December 21, 2007

Dandy Updates

A couple of couples have been in the news lately, increasing awareness about Dandy-Walker. I've opened the following links on my computer recently, while Hannah played on her own computer beside me. Every time my computer spoke the words Dandy-Walker, Hannah's eyes would brighten, she'd turn to me and ask, "Dah-ee Wah-tewh??"

Of course, at five years of age Hannah doesn't understand the full implication of that label. Heck, she doesn't even realize she's different in any way. She innately expects that everyone she meets loves her and wants to connect with her. Not surprisingly (I'm not biased, of course), they pretty much do.

Hannah is not the "typical" Dandy-Walker child, though the more I read, the more I realize there is no "typical" Dandy-Walker person. However, a large percentage of children diagnosed with Dandy-Walker present hydrocephalus (fluid on the brain) which often requires surgery to implant a shunt to drain the fluid. Hannah does not.

If you're interested, these videos show other families who love their children, children who happen to have been born with Dandy-Walker. My personal first reaction was Why haven't I been more proactive? Why haven't I been on TV...or something. I guess it's never too late, but truthfully, I'll probably hang onto the coattails of these two much-younger families and do my part by tapping these posts onto my blog. Oh, and making phone calls to my congressmen.

This first link will play the trailer for a documentary that will be released January 17, 2008.

http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=21753856



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This link is a public service announcement. It's pretty cool to see Dandy-Walker getting television coverage of any kind!
http://www.dandy-walker.org/Flash/Samuel_commercial.html




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Here's a link to a newscast covering a family who is very proactive when it comes to Dandy-Walker.

http://www.wusa9.com/video/player.aspx?aid=53086&sid=65595&bw




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My own special girl...who happens to have Dandy-Walker.



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