Tiny Light Rafe lived as a typical little boy until he was four years old when, as a result of a high fever, he experienced a seizure. He and his parents could never have expected that over the next couple of months, he’d experience seizures with increasing frequency until they became daily events.
After Rafe went through an MRI and other testing, a number of hospital stays and lots of anxious waiting, his doctors were eventually able to diagnose him with child-onset generalized myoclonic seizures. It’s unclear whether he’ll outgrow this disorder, but Rafe has been placed on medication that will hopefully control his seizures and enable him to live a more stable life.
Rafe’s mother Shauna tries to keep his life as normal as possible. She says, “I don’t want the seizures and fear of the next one to keep him from living life to the fullest.” And despite the changes in his life, Rafe continues to do just that. He loves doing gymnastics, bike riding, swimming and playing basketball and especially loves playing Super Mario Bros. with his dad. While his disorder makes life more challenging for his family, his smile and sense of humour bring joy and make all the hard times worthwhile.
Story written by Angela Funk
Images captured by Sarah Spring Photography