To make sure her 3-year-old daughter survived the night on her ventilator, Amber Suarez stayed awake for four hours, then woke up her husband to watch Mia for another four hours as the girl dozed.

It had already been months since the family lost a nurse who assisted them during the day, which meant Suarez had been caring for her disabled daughter since the morning, juggling the needs of Mia and her twin sister, Savannah. She feeds her through a gastrostomy tube, administers breathing treatments, and suctions out fluid from the tube that helps her breathe.

Mia is also supposed to have a nurse at her side by night, but Suarez said the night nurse hadn’t shown up that Friday. The next night, another nurse missed her scheduled shift, forcing her and her husband to stay up again, Suarez said.