Chapel Hill twins diagnosed with rare disease, how family is raising awareness

CHAPEL HILL, N.C. — After a doctor’s office visit in 2017, the Kahn family’s lives changed forever.

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Parents David and Karen Kahn took their twins to the doctor right before their 7th birthday. During the visit, their daughters, Amelia and Makenzie, were diagnosed with a rare, genetic, deadly disorder: Juvenile Batten disease.

Symptoms of the disease include vision loss, then seizures, dementia, loss of mobility and shortened lifespan. The disorder typically manifests between the ages of five and 10.

The couple knew they couldn’t do anything about the path ahead for their daughters. According to WTVD, that’s when David and Karen launched the ForeBatten Foundation.

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