Mother and son who fought the FDA are now fighting the state

The same week she was meeting with the Food and Drug Administration to approve a miracle drug for her terminally ill son, Vermont and the Windham Northeast Supervisory Union filed truancy charges against Jenn McNary and her son.

Austin, 14, has Duchenne Muscular Dystrophy and has not been in school for a year and a half. McNary said there's a reason.

"You've got to have a child who's feeling confident and cared for in his school, and that's the bottom line. He wasn't," she said.

In 2010, Austin, bound to a wheelchair, attended the Bellows Fall Middle School for fifth grade. He had trouble getting into and around the historic building.

"Behind the school, passed a Dumpster, through a closet-- just to get to the elevator," said Austin.

The building was, and still is, in the process of being renovated, and the mother was concerned for her son's safety.

"If the building caught on fire, with its old wiring and its renovation, Austin was not able to get out of that building," McNary said.

Superintendent Christopher Kibbe said the renovations will be finished next week. One goal of the renovation was to make the building universally accessible and Kibbe said they have created a new, ground-level entryway and more ramps. McNary said that it will take more than physical changes to rebuild her trust.

"They weren't even treating him with the respect of other children, I wasn't asking for special treatment," said the mom.

She and her son felt his needs, due to his illness, were being ignored.

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Mother and son who fought the FDA are now fighting the state