On February 15, 2013, Grayson Kole Smith was born to parents Jenny and Kendyl. The Smiths had two older, healthy children. Their third pregnancy had gone smoothly, and they expected Grayson to be a healthy seven- or eight-pound baby boy. (1)
But to their surprise, Grayson was born with several scary birth defects. He was missing part of his skull, and his eyes were swollen shut. He had a hole in his heart, and his spine was curved. Doctors predicted that Grayson would live only a month, and they placed him in hospice care. His parents began to prepare for his funeral. (2)
Grayson’s Diagnoses
Grayson has an extremely rare disease. In fact, he’s the only person to have ever had this combination of conditions. So, his doctors have named his illness after him, calling it Grayson’s Syndrome. (1)
In a recent interview with YouTube channel Special Books for Special Kids, Jenny Smith listed Grayson’s diagnoses:
- Craniofacial deformities
- Hydrocephalus, a buildup of cerebrospinal fluid in the cavities of the brain
- Chiari Malformation, when brain tissue travels through the skull opening where the spinal cord connects to the brain
- Craniosynotosis, which is a malformation of the skull
- Cleft Palate
- Grayson is blind in his left eye and has 70% vision in his right eye.
- Hand and feet deformities, including no bones in his thumbs and three toes on each foot
- Occipital encephalocele, which means that the skull in the back of the head did not close, so the brain protrudes through the head (1, 4, 5)
So far, there has not been an explanation for Grayson’s rare disease. His family had his DNA sequenced, but everything came back normal. (1)
Beating the Odds
Doctors told Grayson’s parents that most children with many of the anomalies that he has do not live long. Instead, Grayson is now six years old. He has had 36 surgeries, including more than 20 on his brain or skull. He continues to grow and develop, despite doctors’ original predictions. (1, 2)
Grayson is now a big brother and loves baseball. His mom says that he never misses watching a Braves game. He loves both of his parents and enjoys texting his dad emojis while he’s at work. (1)
Grayson’s parents have agreed to only make life-saving changes for Grayson. Jenny says, “We don’t want to make changes to his appearance because we adore and love who he is.” She said that if he wants to change his appearance when he’s older, the decision is up to him. (1)
In the meantime, Grayson and his family continue to adapt to life together. Grayson has a feeding machine at home. He gets around the house independently by rolling and army crawling and outside of the home, Grayson uses a wheelchair. (1)
Grayson’s dad, Kendyl, says that being Grayson’s father has taught him how to do everything with more kindness and love toward others. Jenny says that, although it’s difficult, she tries to enjoy the present so she doesn’t miss out. (1) Hopefully, Grayson’s story will inspire everyone who reads it to show more kindness and compassion to others as well.
Learn more about Grayson in the video below!
