Child fights for her life by taking the 'most expensive drug in the world'

“We weren’t sure if she was gonna be alive,” father Rory Devine said.

Ceri and Rory Devine welcomed their first child, Rhys, into the world three months before COVID-19 shut down the country. It wasn't long before the new parents from Redondo Beach, California, began to see the hampering effects of the lockdown on their ability to address unsettling signs in their daughter's development. "There was no comparisons for children because of the pandemic. So we never had the sort of side-by-side or interactions or anything like that, either, so that was really difficult," Rory Devine told "Nightline." Rhys was born on Dec. 4, 2019, after what her parents described as a perfectly normal pregnancy. But while she looked healthy on the surface, on the inside, she was already losing ground. It would take months for her parents to realize it. "We got to about three, four months, and I noticed she wasn't moving as much as other babies," Ceri Devine said.