Meet Mylee

  Mylee always stumped the medical community.   For  the longest time her doctors would joke she   would be written in medical journals as having  "Mylee  syndrome"!  All jokes aside, her brain      started to  deteriorate in December of 2009.  I  will never forget  the words her neurologist  used, Mylee ha s a  neurodegenerative  progressive disease.

 Mylee was presented with challenges from the  very  beginning.  She spent time in the NICU  after her  birth  due to aspiration issues.  She  would eventually  have  lung disease because of  aspiration and spent  countless  days in and out  of the hospital her first  year of life.  After her 1st  birthday and 2 MRI's later,  her  neurosurgeon  would perform a brain  decompression  to fix  her Chiari Malformation.  By  this point in her  medical journey, Mylee saw many  specialist to  help in  almost every organ system.  She  also  required a  gastrostomy tube for nutrition.    Mylee was unable to  e at or drink anything by  mouth.  We now believe the  initial surgeries  requiring Mylee to be able to live a  productive and healthy life did just the opposite.  The  disruption of the Mitochondria caused her body to go  into a downward spiral and over the coarse of next 4
 years she frequently spent time in and out of the hospital and worked with therapists each week to improve her different abilities.   

In December 2010, Mylee Grace our precious 3 year old at the time was diagnosed with an incurable neurodegenerative disease called Mitochondrial disease.  On June 21, 2012 shortly after 6am, our beautiful little girl took her last breath.  She fought so hard and always with a smile.  Our daughter, our sister, our teacher, our friend - she was a believer and she taught so many the beauties in life.  She taught us to Never Give Up!!

Click on the image below to learn how you can help in funding research to help with new treatment plans and one day find a cure for Mitochondrial disease.  Charity event coming soon!!


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