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 has a neurodegenerative progressive disease.
Mylee was presented with challenges from the very beginning. She spent time in the Neonatal Intensive Care Unit 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 specialists to help in almost every organ system. She also required a gastrostomy tube (also known as a g-tube) for nutrition. Mylee was unable to eat 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 course 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 clinically diagnosed with an incurable neurodegenerative disease called Mitochondrial Disease. During the next year and half, Mylee underwent many tests to determine a specific Mitochondrial Disease or other similar disorders that mimicked her Mitochondrial diagnosis. Unfortunately, Mylee's body became too weak and she was placed on palliative care. 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!!
With the help of The Mylee Grace Research Fund, our family is hopeful in the advancement of medical technology to help other families with new treatment options to fight these rare childhood disorders.
To learn more or to support the The Mylee Grace Research Fund click on the donate button located on this page.