Star Map's Chiari Malformation Adventure

Star Map's Chiari Malformation Adventure

From Shauna Kennedy

Star Map, my 5 year old daughter, will be having brain surgery due to a large Chiari Malformation Type 1 that is causing debilitating neurological symptoms. There is no cure but this will help her symptoms.

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On April 28th our lives changed completely when J, my 5 year old daughter (who we affectionately call "Star Map" online) was diagnosed with a brain condition called Chiari Malformation Type 1 after struggling with debilitating neurological symptoms.  

This is a structural malformation of the brain where the brain stem, cerebellum, and cerebral tonsils are too large to fit in the normal cavity of the skull and descend outside of the forum magnum (large oval shaped opening at the base of the skull) into the spinal canal.  Think of it like the bottom of the brain acting as a cork, not only damaging the brain itself by physically pressing against the top of the spinal column but also to the spine by blocking cerebrospinal fluid circulation in the entire spinal column.  

Chiari Malformations can cause a myriad of debilitating symptoms like headaches, neck aches, back pain, body pain, nausea, vertigo, forgetfulness, discoordination to more severe symptoms like blindness, paralysis, seizures, and death.  There is no cure for Chiari.  

The only treatment currently is decompression surgery, which helps to mitigate symptoms.  Decompression surgery consists of permanently removing sections of the skull, C1, and brain in order to help make room and alleviate the pressure on the brain and in the spinal column.  

Star Map is no stranger to fighting for her life.  She was born 9 weeks early and spent 40 days in the NICU. She is loving, maternal, gentle, graceful, endearing, intuitive, emotional, spiritual, keen, full of life and the epitome of love in motion.  She is the definition of a warrior.  

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