Wednesday, May 2, 2012

Introducing Kylie

I have previously warned you that I ramble and tend to write in run-ons. I am warning you again.

My niece Kylie, practicing her "big eyes"!

Yesterday one of my nieces celebrated her eighth birthday. I cannot believe she is that old! I wanted to write about her last night but didn't prioritize like I could have. And I have gone back and forth about how anonymous I want to remain, and introducing Kylie to you will be a large step away from anonymity, and while I don't really mind you knowing about me and my family, I haven't really told anyone besides my husband that I am blogging and it seems like I could lose that bit of security I have in keeping this blog to myself.

Anyway, back to my introduction! You may have heard about my niece already. At eight years old she has already been featured on Anderson Cooper! You see, Kylie is a bit of a medical mystery. Her working diagnosis is "Neuro-degenerative disease of unknown origin". She has seizures that aren't "normal", constant tremors, numerous things that I cannot pronounce or definitely can't spell correctly. She has been to Stanford, UCDavis, UCSF, Shriner's, and at least one other that I cannot remember. And she has been seen at the NIH.

Kylie developed normally, above average even, and showed no signs of illness until she was 3, when she developed Type 1 Diabetes, then at 4 she started having tremors and seizures. She regressed physically so fast that the doctors started warning my sister and family that she may only have months to live. She has beaten the odds but there are still no answers and she is not getting better.

Here are several links to find out more about my niece if you are so inclined:

Anderson Cooper 360 article and video
Sanjay Gupta video from AC360
Another Sanjay Gupta video from the Anderson Cooper segments
Kylie's Caring Bridge Page-most complete source of info, you may need to connect with Facebook or enter an email address (sometimes it loads automatically after sititng on the login screen for 15-20 seconds)
Kylie's official .com, it's a work-in-progress
Kylie's official Facebook page-updated most frequently

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