In December 2010, 3 year old Mylee Grace, was clinically diagnosed with an incurable neurodegenerative disease called Mitochondrial Disease. Mylee first presented with breathing complications as a newborn, spending time in the Neonatal Intensive Care Unit (ICU), and was later diagnosed with aspiration lung disease. In the years following, she underwent many tests and surgeries to help her live a happy and productive life. “After her 1st birthday and 2 MRI’s later, her neurosurgeon would perform a brain decompression to fix a brain malformation called Arnold Chiari Malformation…She also required a gastronomy tube (also known as a g-tube) for nutrition”. www.tgen.org
Unfortunately, the surgeries did more harm than good, causing her body to weaken and her systems to fail. On June 21st 2012, after a long and hard fight Mylee passed away.
This Sunday, January 19th, Mylee’s Marathoners will be just one of 13 teams that running for TGen’s Center for Rare Childhood Disorders at the P.F. Changs Rock ‘n’ Roll Arizona Marathon & ½ Marathon. To date, the teams and their supporters have raised over $55,000. “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”, her father Dave says.
Look out for Team Mylee on course! Mylee’s Marathoners will wear t-shirts with a sticker of Mylee and a butterfly insignia, representing her research fund and mantra, “Never Give Up”.
You can also bring hope to families living with rare childhood disorders by making a donation to TGen. Click here