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A Baby Girl With A Rare Disorder Needs A Special $2.1 Million Dollar Medication To Live Past Two


There are a lot of unexpected situations that might happen after you have a child. For one, even though we’ve been procreating since the beginning of time, labor and delivery can still be risky. Secondly, your baby may be born with an illness you never expected.

Ceri and Rory Devine live in California, and they’re the parents of a 6-month-old named Rhys. From the outside, Rhys looks like a happy baby. But she’s fighting a rare disease that many children don’t overcome. When she was only 4 months old, Ceri realized that Rhys had some difficulty with lifting her head.

“She always struggled with tummy time, and wasn’t able to roll over or hold her head up for very long,” she wrote on her family’s blog. The physician they saw suggested physical therapy. However, things still weren’t improving.

“At her 4-month check-up, our pediatrician said she just had low muscle tone and recommended physical therapy,” she wrote. “At her next check-up at 6 months, the pediatrician immediately noted Rhys’ lack of progression and expressed concerns that she may have Spinal Muscular Atrophy, a genetic condition we had never heard of before.”

Hearing about a condition like this is a nightmare for parents. Ceri immediately went on Google and was devastated to learn more about the condition. Most babies who have it don’t live until the age of two.

Source : https://www.littlethings.com/baby-girl-sma/