Boy Diagnosed with Rare Disease. Years Later, He Could Lose All Progress (Exclusive)

After going through the unimaginable when their young son was diagnosed with a rare, neurodegenerative disease, Emma and Dylan Jobsis have found themselves once again fighting for their son.

The Alaska-based couple's son, Cade, was just 2½ years old when he was first diagnosed with spastic paraplegia type 50, or SPG50. According to the National Organization for Rare Disorders, the disorder generally presents with a global developmental delay, moderate to severe intellectual disability, and seizures and progressive motor symptoms, amongst other things.

"We started noticing things around four to 5 months," Emma tells PEOPLE. "Cade wasn't hitting milestones, and we knew in our gut something was wrong. But doctors didn't listen at first."

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