For the past few years, I have been documenting a family whose sons are the oldest people living with Canavan Disease. Canavan Disease is a rare inherited disorder that causes progressive damage to nerve cells and the brain. Usually beginning in infancy and early childhood, Canavan Disease results in profound physical and intellectual disabilities.
Jason’s parents were devastated when they learned their first born child would live just a few short years after birth. Their second son Josh, born eleven years later, and conceived after extensive genetic testing, also suffers from Canavan Disease. In spite of the prognosis, Jason and Josh’s parents have done all they can to keep them alive and they have outlived all expectations. Canavan Disease and its unexpectedly long-term survival has greatly challenged Josh and Jason and impacted their parents and their healthy adopted sister.