Caesar isn’t like most 8-year-olds. He’s excellent at math – he was on a third-grade level at age 5. He’s an exceptional violinist – he met and played for the famous violinist Itzhak Perlman in September 2016. He speaks seven languages – including Russian, Hebrew and German. He also has sickle cell anemia.
Caesar endured three strokes brought on by his sickle cell in just two years. The National Geographic did a documentary about him after the third stroke that left the child prodigy temporarily paralyzed at age 5. He has had to relearn how to walk, how to play the violin, how to hold his pencil to do math problems.
These days, Caesar is learning to ride a bike, and he’s back to playing violin pretty well, said his father, Lucas. But Caesar keeps practicing so he can be even better than before. The music has helped keep Caesar motivated to continue the difficult work required to retrain his body, Lucas said.
Each month, Caesar and his father make the two-hour drive from Winston-Salem to Levine Children’s Hospital in Charlotte for the blood transfusions that keep Caesar from suffering another stroke. The most nerve-wracking part of their day is waiting for the blood. If the blood is not available and ready, their full day at the hospital can turn into an overnight stay.
There are only a few donors whose blood type is compatible with Caesar’s very specific requirements. That makes each trip to Charlotte terrifying for his father, who relies solely on the kindness of strangers to provide the lifesaving blood his son needs.
“When I make the drive to Charlotte, sometimes I really feel sick,” Lucas said. “When I’m back home and I open the garage and park the car, it’s like I was holding my breath the entire time. When I’m sitting in that parked car, I know I did my job. And I thank the donors for helping to finish this small chapter of our lives. If we don’t have the blood, the whole thing is jeopardized.”
After Caesar’s second stroke, he needed a blood exchange. That meant doctors needed multiple units of his very specific blood type, fast. Caesar’s mother, Aline, said it took 24 hours to get the blood he needed.
I thank the donors for helping to finish this small chapter of our lives. If we don’t have the blood, the whole thing is jeopardized.”
“Sometimes, it’s like we take it for granted,” Aline said. “We come here and we have the blood for him. It’s so nice, right? But what if the blood isn’t available? Right now, we know four people out of the pool of donors can donate to him. It’s just four people. If one of them gets sick …”
Caesar’s parents know that if donors realized what an impact they were making on the lives of local patients, they would never stop donating. Lucas was a blood donor himself for a long time while he lived in Brazil.
“I was so proud,” he said. “I was doing something good. But I never imagined I would ever have a son who had sickle cell. I was not donating thinking anything like that.”
The hope for Caesar is that he can receive a bone marrow transplant from the saved umbilical cord blood of his younger sister, Helen. The family has everything for the transplant, except the money required to make the expensive procedure happen. While they wait for the transplant, the family continues to make monthly trips to Charlotte to spare Caesar from more pain crises brought on by his blood disorder.
“He’s a very heroic boy,” Lucas said. “Not because he’s my son. But he’s a heroic boy.”
To follow Caesar’s journey online and learn how you can support his cause, click here: www.caesarviolin.com