“On January 3rd, 2018, Cecilia and Lilly were diagnosed with CLN3 Batten Disease. Batten disease is a neurodegenerative disorder. There is no treatment, there is no cure, it is fatal. It is usually first diagnosed with vision loss. Eventually, they will develop seizures around age 9. Dementia symptoms including mood and behavior changes will present. Their muscles will weaken to the point where they will no longer be able to walk or talk and will be bedridden. Eventually, they will need a feeding tube as they will no longer be able to feed themselves. And then, eventually, they will die. The lifespan for this horrible disease is late teens to early twenties.” ~ Excerpt from the Rare Sisters Blog
I met and photographed the Fries family in 2017 shortly before the diagnosis of both Cecilia and Lilly, not knowing at the time where the meeting would lead. This long-term ongoing project is just as much a celebration of this family of 7 as it is an important body of work that documents how Batten Disease affects those fighting it. Both the Fries family and myself hope that these pictures raise awareness, encourage donations and facilitate more aggressive research for future families. This is a story of love, pain, resilience, hope and faith.