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Kaylie’s Story (Chiari Malformation)

Hayley's story (Chiari 1 Malformation) LRHi, my name is Amber Barnes. My husband, Benjamin Barnes (Moore Police Officer), and I have a 5 year old daughter named Kaylie. My daughter was diagnosed with Chiari 1 Malformation. Short story of it all: her brain has run out of room, so it is now protruding down into her spinal column. This condition causes her to have severe headaches, eye & ear pain, and a whole list of other symptoms.

There is no cure for Chiari, except to have Posterior Fossa Decompression surgery.. (brain surgery)… basically they remove a small part of the back of her skull to make room for the brain. This sometimes helps with symptoms… but each patient is different, and she could need another surgery in the future. She is scheduled to have surgery July 27th in New York by a neurosurgeon that specializes in this rare condition. His name is Dr. Harold Rekate of The Chiari Institute.

If you have any questions… you can check out her website at www.kaylieschiari.com

I was actually coming to the site to order a couple things… do y’all sell kid sizes??? She is tiny… like size 6, I wanted her to wear a Fight like a Girl shirt the day we fly out to NY… let me know if you do so that I can order them… or do you sell an iron-on or anything??

Amber
Oklahoma
Submitted 7-5-2012

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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