Client Spotlight: SMA2 Warrior Oliver Schaper

Five-year-old Oliver Schaper loves speed. It is common to see him doing laps around the ball field, plowing through puddles or barreling toward or away from his mom or dad in his 350-lb power wheelchair, grinning from ear to ear. Oliver received his first custom fitted power chair three years ago. And, he’s been racking up the miles ever since.

Oliver’s mother Misty calls him a charming, determined SMA2 warrior. Both, Misty and her husband, Oliver’s father, Keith Schaper, are resilient and strong veterans. However, when they received Oliver’s SMA type 2 diagnosis last spring, when he was only 14 months old, their world was rocked. For two months, time seemed to stand still as they researched the disease they knew nothing about. SMA (spinal muscular atrophy) robs individuals of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. Research led the family to Cure SMA, an organization dedicated to the treatment and cure of SMA, now one of their trusted resources and networks.

Around two months following his diagnosis, Oliver received his initial treatment of Spinraza, the only approved therapy for SMA, completing his loading doses over the summer and a maintenance dose this fall. The family is hopeful that the movement and strength he’s gained as a result will continue to improve. Between treatments, they continue to do the things they enjoy together including bike rides, park visits, swimming, kayaking and now camping after they took their first camping trip since Oliver’s diagnosis.

Oliver’s favorite person on the planet is his big sister, Elliott, his fierce protector and advocate. They love to race, play chase and tag, Oliver in his chair and Elliott in her toy 12v gator. Oliver is sweet, polite and never forgets a thank you. He is also determined, and adaptable, always figuring out ways to work with his body’s limitations. Misty and Keith are amazed to watch their fearless little boy continue to push through limits. Friends and family in nine U.S. states and in Mexico are pulling for his progress and raising awareness of SMA as proud members of “Team Oliver.” Oliver loves to make others smile. He may not be aware how much he’s inspiring his parents, friends and family to focus on and appreciate the now.