Every day, 9-year-old Jayse Monty pulls on his superhero cape to do mighty battle with an invisible villain: Mitochondrial Disease. Like Kryptonite, Mito saps Jayse's strength, but it doesn't dampen his spirit.
Jayse had been a colicky baby with lots of tummy problems, which doctors passed off as 'normal.' Then he developed pneumonia, which was attributed to weakness in his swallowing muscles. Then around age 2, he started losing basic skills.
"One day, he could open the door, the next day he couldn't," his mother Jamie recalled. "One day he could walk up stairs, the next day, he couldn't. No one could figure it out… then the day before the Super Bowl in 2009, he woke up and couldn't walk… so we got genetics involved."
Mitochondrial Disease is a chronic, genetic disorder that occurs when the power plants of the cell fail to produce enough energy for cell or organ function. There are many forms of mitochondrial disease, which affects about 1 in every 4,000 individuals in the U.S.
The specific gene responsible for Jayse's Mito has not yet been determined, thus Dr. Vinodh Narayanan and the team at TGen's Center for Rare Childhood Disorders focuses on alleviating his symptoms. Currently, Jayse receives IV nutrition and medication that limits some of his superhero activities but doesn't keep him down.
"He's funny. He's smart. He always has a smile, and he asks everyone at the clinic, 'So have you found my cure yet?" Jamie said. "All of our Mito disease kiddos are different, but you just hope that the science will catch up and we will find a treatment. Dr. Narayanan and the team give us hope."
Jayse's Mito Rascals supports Mitochondrial Disease research at TGen's Center for Rare Childhood Disorders. Help us help heroes like Jayse. To support Jayse's Mito Rascals, click donate button above.
