CAREGIVER SPOTLIGHT: THE POWER OF ADVOCACY

Early on, Deborah sensed something wasn’t quite right with her son, Jeybriel. He seemed weak when he started to crawl and walk, and he’d stand on his own but then fall suddenly. Everyone told Deborah she was being “dramatic,” that all children fall. But as a mother, she wasn’t convinced.

She kept searching for answers until a doctor finally confirmed her suspicion: Jeybriel had SMA. That SMA diagnosis changed their lives in an instant. Today, she’s helping him build strength and grit, whether he’s climbing the big kids’ slide at the park or doing chores at home. Like many parents and loved ones caring for a child with SMA, her hope is that Jeybriel can be independent in the future and achieve whatever he wants to in life.
 
“I encourage parents to be extremely observant with their children,” Deborah says. “If a doctor gave you an opinion and you weren’t convinced, keep looking.” Deborah’s persistence helped Jeybriel get the care he needed, and her support keeps him moving forward every day. That’s the kind of strength the SMA community is built on.