In the past, spinal muscular atrophy (SMA) has typically been considered a fatal disease. But there is new hope for children with the genetic disease.
In Ohio, a baby with the rare disease, who wasn’t supposed to make it to a year, has surpassed that.
It seemed like everything was normal for Robbie. He could move his arms and move his legs. Then, about five months after he was born, things changed. Within three weeks of everything seeming completely normal, he just stopped breathing. The family soon received his diagnosis of SMA.
Robbie’s mother stated that, at the rate he was declining, it seemed as if he would not live even a few more weeks. Furthermore, his doctors informed the family they needed to get ready to let him go.
Thankfully, around that time, a drug to treat SMA called Spinraza became available.
So far, Robbie has received the treatment twice via a spinal tap. The drug has slowed down the progression of the disease. For others who have taken the drug, some function has returned.
Robbie celebrated his first birthday in March and, at that time, was able to give high-fives and wave. His parents are excited for him to hit more milestones thanks to the new medicine.
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