Private Story
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There is no cure for FOP but there are promising treatments in the works, with one drug having recently been approved in Canada. Because FOP is caused by a single gene mutation, there is some hope that it could be a good candidate for gene therapy as well.
For the young children diagnosed with a particular rare genetic disorder, anything that results in even the slightest amount of muscle damage can have life altering consequences, leaving parents in an endless internal battle; wanting their children to lead joyful lives while also needing to protect them from the daily activities that define childhood.
These images are the beginning stages of an ongoing photo story about AJ Gonzales. He is now 12-years-old and was diagnosed with FOP at the age of 2. His parents, Kristi and Rico, though protective, want AJ to lead an active and fulfilling childhood. He plays sled hockey, basketball in his backyard, and goes to public school. He is also an avid gamer which allows him a risk-free environment to play and interact with friends. AJ is currently undergoing a clinical trial, one of the many ways in which his family will stop at nothing in hopes of a promising future for their son.
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