'The agent begrudgingly said he'd call Mark, but also said not to get my hopes up. Ninety seconds later, I got a call.'
lose their vision and suffer from seizures and a loss of motor and cognitive control before their early deaths. The Sikorras' younger son, Ben, was diagnosed with Batten disease as well.
Sikorra said that initially after the diagnoses, life"turned dark for all of us," but then he and his wife Lori decided to focus on making life the best it could possibly be for their family, to"live in the moment and to live joyfully."
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