Written by 1:05 pm Lifestyle • Views: 4

Rhys Fights For Her Life By Using The World’s Most Expensive Drug.

Worlds most expensive medicine


Ri and Rory Devine gave birth to their first child, Rhys, three months before COVID-19 shut down the country. It wasn’t long before the new parents from Redondo Beach, California, how the lockdown was impeding their ability to address concerning signs in their daughter’s development.

“Because of the pandemic, there were no comparisons for children. So we never had the sort of side-by-side or interactions or anything like that, which was really difficult,” Rory Devine said on “Nightline.””

Rhys was born on December 4, 2019, following a perfectly normal pregnancy, according to her parents. But, while she appeared to be in good health on the outside, she was already losing ground on the inside. It would take her parents months to realise.

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

“By three or four months, I noticed she wasn’t moving as much as other babies,” Ceri Devine explained.

Rhys was missing developmental milestones; her parents reported that she wasn’t performing simple movements such as raising her head and moving her legs.

“She slips right through your fingers because she has no muscle tone,” Ceri Devine explained. “It’s the equivalent of holding a 19-pound newborn.”

As COVID-19 compelled doctors to use telemedicine, the Devines were relegated to virtually explaining Rhys’ condition to her doctor. Doctors told Rory Devine that Rhys only had low muscle tone, according to Rory Devine. She was put on a physical therapy regimen, but her condition worsened. Ceri Devine stated that Rhys was still unable to move her legs at 6 months old. She admitted to becoming “frustrated” while watching other people’s children grow up on Instagram because their children were already sitting up despite being months younger.

Throughout, I kept telling myself, ‘Look, the doctor said it’s fine.’ It’s not a big deal. ‘I was a sluggish developer,'” he says. Rory Devine stated that he had informed his wife of the situation. “And she was the one who kept saying something was wrong.”


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