Today's JTWF Special Kid: Mylee

My name is Mylee Grace. I was born on August 14, 2006. I have been a fighter since the very beginning. I started having difficulty breathing and spent nine days in the Neonatal Intensive Care Unit where I fought my first battle with aspiration pnuemonia. My first year of life was difficult, I spent a lot of time in and out of hospitals battling more pneumonia and trying to figure out what was wrong. I was diagnosed with severe dysphagia. I aspirate on everything, which means I don't recognize when food or liquids "go down the wrong pipe"...into my trachea and lungs.

My first MRI discovered Mild Tonsillor Ectopia (aka Chiari Malformation). I was to have another MRI scan at 1 year. In November of 2007 I went in for another MRI and this time I was diagnosed with a Chiari type 1 Malformation. I met with my neurosurgeon as I lay in-patient yet again battling another round of pneumonia.

On January 14, 2008 a Nissen Fundoplication was performed so that I would not aspirate stomach acid
(I also had reflux/GERD). My surgeon also placed a gastrointestinal tube into my stomach. I am no longer able to eat or drink anything by mouth. Everything is given to me via g-tube until my brain starts to send the proper signals allowing my swallowing muscles to work properly.

On January 17th, 2008 just 3 days after my first surgery, I had a brain decompression. My brain is no longer herniating into my spinal column. I will continue to have brain MRI's to check for any abnormalities caused by this disorder.

In July, 2009 an abnormality was found yet again on my MRI, cerebellar atrophy. I have been diagnosed with an unknown progressive neurodegenerative disease. I have been clinically diagnosed with Mitochondrial Disease. And at this time it is unknown how much of my brain cells will be taken from me or how much of the atrophy will spread. My team of doctors continues to look for answers to all of my families questions. I am currently in Physical, Occupational, and Speech therapy. I work hard everyday so that one day I will be able to eat by mouth, walk on my own, and say the simplest things like "mommy and daddy". You can follow my journey www.caringbridge.org/visit/mylee.