CAITLIN O'HARA

STORIES / Fighting the Batten Monster

An ongoing collaboration with the Kahn family of Scottsdale, Arizona. David and Karen have 8-year-old fraternal twins, Mackenzie and Amelia. In 2017, they were diagnosed with Juvenile Batten disease (CLN3). As the rare, fatal and rapidly degenerative neurological condition progresses at different paces in each girl, their family navigates their unique childhood with planning for what the disease will take from them: loss of vision, developmental regression, behavioral changes, memory loss, seizures and mobility loss.

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