A few months after giving birth to her “quarantine baby” during the pandemic, Ceri Devine noticed Rhys just wasn’t hitting her normal milestones.
For example, it looked like Rhys had a particularly difficult time holding herself upright.
Ceri’s friends told her not to worry. Even her pediatrician said Rhys simply had low muscle tone.
But Ceri knew she needed to listen to her maternal instincts.
At her six-month check-up, Rhys’ diagnosis was earth-shattering. “It might be spinal muscular atrophy,” the doctor said.
On their way home, Ceri googled the condition and instantly felt a punch to the gut. “The first thing that came up was … most infants diagnosed with SMA do not live past two years of age,” she told CBS Los Angeles.
Spinal muscular atrophy causes an infant’s muscles to disintegrate. Over time, the infant struggles with mobility, eating, and oftentimes breathing without the use of a ventilator.
Making matters even more heartbreaking is the fact Rhys has the most severe form of the disease.
Ceri and her husband felt so helpless, hopeless, and terrified. But when they heard about medication that could potentially save their daughter’s life, they were ecstatic at the thought of finding a cure.
However… there was one big catch.
To help give Rhys a fighting change, please visit the family’s official GoFundMe page.
Source : https://www.littlethings.com/quarantine-baby-rare-disease/