At age 4, musical prodigy Caesar Sant could play Vivaldi and Tchaikovsky on the violin, knew six languages and was easily doing third-grade math.
At age 5, he had his first stroke.
It was a blow that hit the reset button on the musical and intellectual prowess of Caesar, who had been diagnosed with sickle cell disease at birth and began playing violin at age 2.
“I did my best to get better, but it was very scary because they put a bunch of needles in me and I could not move,” said Caesar, now 9. “This year my father will have the money, I hope so, to take me somewhere so I can have my transplant.”
Caesar is in need of an expensive bone marrow transplant that will help cure his sickle cell disease, a condition where there aren’t enough healthy red blood cells to carry oxygen throughout the body and which can block blood flow to the brain causing a stroke.
By Caesar’s second stroke, six months after the first, doctors said that only 20 percent of his blood cells were healthy.
Caesar has now had three debilitating strokes, each more devastating than the last.
“The last one, it literally almost killed him,” his father, Lucas Sant, said. “They said ‘It’s very likely your son is going to die.’ I asked God what to do. I would do anything.”
In 2014, a stroke paralyzed Caesar, leaving him unable to speak or move for a week with the uncertainty of whether the damage was temporary or permanent.
“Why can’t I move? Why am I sick?” Caesar would ask.
It took Caesar six months to relearn how to walk. The strokes had stripped him of his ability to play the violin, forcing him each time to relearn and reassert his position as one of the best young violinists in the world.
“He plays things that not many people in the whole world can play,” Sant said. “With the strokes, he lost function of his arms and his legs, but he didn’t lose the hope.”
As Caesar slides his bow across the violin with a precise and gentle stroke, a fierce look of determination beyond his years crosses his face, framed by his long curly black hair. His passion is evident as he masterfully plays one of his favorites “Hallelujiah.”
“Music makes me happy,” Caesar said. “I practice a lot. I love it so much.”
His parents said Caesar showed an interest in music at 7 months old after they bought him a toy violin that he would pretend to play.
One day, after watching a cartoon, he played the cartoon theme song on a piano by ear and memory, his father said, and that’s when they knew his musical talent was something extraordinary.
Caesar began learning violin at age 2 and as a toddler stunned his music teachers with his advanced natural abilities.
“He was a very happy child, doing everything with a unique passion that was amazing everyone around him,” his father said.
As a toddler, Caesar also quickly picked up English, Chinese, Russian, Hebrew, Greek and his parent’s native Portuguese. Caesar’s parents are both natives of Brazil.
Sant, who moved from Brazil in 2003, stepped back from his job as a neuroscientist at the Wake Forest School of Medicine so he could support his son full-time.
“With Caesar’s last stroke in 2014, I no longer worked on my dream job which I invested my whole life on,” his father said. “Instead, I started working intensively with my whole being on Caesar’s recovery from giving him a bath, teaching him how to use is arms, to write, eat, play his violin (and) walk.”
Caesar is mostly recovered although the right side of his body is weaker and he can’t stand on one leg, his father said. After his third stroke, it was a while before Caesar could even hold a violin.
“You did pretty OK Caesar,” his father told him of his first lesson back.
“OK is not good,” Caesar responded, frustrated with his hands that refused to dance along the neck of the violin as they once had. “OK is bad.”
Caesar’s passion for music became his motivation for physical therapy and his light on the toughest days as he fought to relearn how to play.
Caesar, who is homeschooled, practices his violin for two to three hours a day for no more than half an hour at a time. Between practice sessions, he meditates or drinks tea to absorb the knowledge, his father said.
“For a child to keep fighting and come back, you have to give them a reason to stay strong. Music was his reason,” Sant said. “I’m always saying that the violin saved his life.”
In 2015, when his mother Aline became pregnant with her third child, she told Caesar: “When the baby is born, the baby will give you a gift and you won’t be sick anymore.”
In vitro fertilization had allowed their third child to be born free of sickle cell anemia. They had selected an embryo that was an exact bone marrow match for Caesar.
At the time his baby sister, Helen, now 3, was born, doctors took a donation of umbilical cord blood that could one day be used in a bone marrow transplant for Caesar.
The only catch is the hefty price tag that has barred Caesar from receiving the life-saving bone marrow transplant yet.
“We don’t have the money to pay for such an expensive procedure, which goes way beyond the bills itself, such as the post-transplant needs,” his father said.
For the past few years, Caesar has been inducted into a grueling monthly routine of blood transfusions in Charlotte. It’s a band-aid fix that helps to decrease the chances of new strokes, but poses other health concerns and doesn’t cure the disease he was born with.
The family sold their car and has been been without a vehicle for several months, but their profit was pocket change compared to what they need for the transplant.
A case where umbilical cord blood was used to treat sickle cell was successful in Florida, but cost half a million dollars, Sant said.
A Go Fund Me page was set up a few years ago and remains active. It has since raised nearly $44,000 of the half a million dollar goal.
It could take years to collect the money, but Caesar doesn’t have years, his father said.
“We have everything — the blood, the donor — we just don’t have the money,” Sant said in a plea of a father desperate to save his child. “We really have to do this transplant this year.”
‘A kid who never gives up’
Although Caesar is in recovery and undergoing blood transfusions, his legs and arms still lack power and coordination, his father said.
That hasn’t stopped Caesar from relearning how to play the violin and playing in venues around the country, including MGM Grand in Las Vegas in front of a crowd of 3,000 people.
In 2016, the Make-A-Wish Foundation granted his wish to play for his idol and one of the world’s greatest violinists, Itzhak Perlman.
Perlman is an Israeli-American violinist, conductor, music teacher and Presidential Medal of Freedom award winner who has played in venues worldwide, including for Queen Elizabeth II and at presidential inaugurations.
“It was just like a dream come true,” Caesar said.
“Mr. Perlman said that I was good and I told him when I grow up I want to be a violinist like him.”
Around Christmas, Caesar and his family created a video of him playing “Hallelujah” and posted it online as a plea to get noticed by the Ellen Show, where he dreams of playing for Ellen DeGeneres.
His younger sisters, Helen and Maria-Anita, 5 — who was also born with sickle cell anemia, but has not had any complications yet — are also in the video asking Ellen to consider their brother.
Caesar was also recently approached by “America’s Got Talent,” his father said.
While the financial and health issues remain a pressing concern, the family maintains hope that everything will work out, inspired by Caesar’s raw talent and resilience in the face of tribulation.
“So many people get struck and they stay down, but not Caesar. If he can do it, I can do it, too,” his father said. “This is not a movie, it’s not a book, it’s a real story of a kid who never gives up.”