Grayson Kole Smith was born on February 15, 2013. He is the youngest of three children and his parents have two healthy children before him. Jenny’s pregnancy with Grayson went just as smoothly too!
However, Grayson was born with a slew of serious and mysterious medical issues that no one predicted. He barely had the strength to breathe; he couldn’t see or hear anything whatsoever. His eyes were swollen shut, his head misshapen from missing pieces here and there in places where they should have been solid skull structure instead. There was also a hole in his heart, the curvature of the spine, and severe facial deformations.
Grayson’s doctors were completely stumped by his mysterious condition. They tried everything they could think of to determine the root cause, but no genetic testing or DNA results seemed to provide any answers.
Grayson is the only person in the world to have been diagnosed with this disease, Grayson disease. Because of this uniqueness, it has become known as a disorder that solely belongs to him and he was even given an eponym for being its namesake: Grayson syndrome.
The doctors got the little boy into hospice care and told Jenny and Kendyl to prepare for their son’s worst. They even started making funeral plans, which was an extremely gut-wrenching process.
Despite the many surgeries he has undergone, Grayson’s story is one of survival and hope. At 6 years old, Grayson continues to defy all odds as a medical marvel who has survived 36 surgeries so far.
Watch this touching video of this young boy who is always smiling and happy despite his condition. His mother describes him as “a ray of light,” an optimistic child that never seems to feel down or sad, no matter how much pain he might be in.”
