9-year-old with sickle-cell anemia suffered three strokes—doesn’t let his condition get in the way of his passion

He is an inspiration
January 3, 2018 10:05 am Last Updated: January 3, 2018 4:02 pm

Caesar Sant is not like other 9-year-old boys. He doesn’t get to do the same things as his peers, and many times he has to go to the hospital to seek treatment for the disease he has.

Caesar was born with sickle-cell anemia, a crippling condition where the red blood cells in a body are not round as they normally should be, but instead are sickle-shaped. This causes the cells to easily get stuck in his veins.

Typical effects of sickle-cell anemia include chronic pain, and strokes—which Caesar has had three of.

Posted by Caesar Sant on Tuesday, December 5, 2017

Sickle-cell anemia is a genetic disease. Looking at Caesar, one might not realize he’s sick at all. But make no doubt, he has been suffering with the condition for as long as he can remember.

“Every man who has a dream of having a child, dreams of a child like Caesar,” Lucas Sant, Caesar’s father shared in a National Geographic video. “You look at him and you just say I cannot believe he is sick.”

In 2014, at age 5, Caesar suffered his third stroke in 18 months, the most devastating one yet.

Almost overnight his life was changed, taking away his ability to walk and even paralyzing him for a time.

(National Geographic/Screenshot)

“For one week he was fully paralyzed,” Caesar’s mother Aline Santos explained. “He could not even speak. And he would just look at everybody moving his eyes.”

However, throughout the good and the bad times, Caesar’s parents knew one thing, without fail, that could always make him smile: music.

“We realized that he loves music and we put music [on] for him but when he heard the violin, you could see tears on his eyes,” Aline said, talking about the time when Caesar was paralyzed. “His face was just a big question mark, ‘why?’”

Even at 22 months old Caesar expressed interest in music, as his parents’ YouTube videos show. As a result, at age two his parents arranged for him to have music lessons with his preferred instrument, the violin.

He quickly showed a natural talent for playing the violin.

(National Geographic/Screenshot)

“Music is the important thing [to Caesar]. You see kids 12 years old play what he was at four,” Lucas said. “I’m always saying that the violin helped save his life.”

Throughout his treatment for his condition, Caesar has always been able to look to his music as a comforting platform that can take his mind away from his problems.

He dreams of becoming a world renowned violinist, performing on the biggest stages in the world.

Following Caesar’s third stroke, as well as losing the ability to walk, he lost the ability to play the violin.

(National Geographic/Screenshot)

But with time—and perseverance—six months later he was eventually was able to walk again. And, though his footing was still a little shaky, he began his violin lessons again too. 

“The first day I took him to the violin lesson, he was crying [because] he was not able to play,” Lucas said.

His violin teacher Amelia Weesner had recognized his gift for the violin as soon as she had started teaching him, and was saddened to see him suddenly unable to play.

“I was playing the Vivaldi A minor when I was 12, and Caesar was playing that when he was 5,” said Weesner.

“At our first lesson after his stroke … he tried to play it for me and he couldn’t play one note.”

(National Geographic/Screenshot)

So he had to start learning all over again. With much practice, four months later, he started to regain some of the joy of playing. In 2016, the Make a Wish America Foundation organized for him to meet and play for one of the world’s top violinists—Itzhak Perlman. And last year, Caesar was working on recording his first music CD.

But still Caesar has to cope with his illness. He has to receive monthly blood transfusions to prevent further strokes. He also works hard to build up strength in his limbs, with boxing and bike riding proving to be favorite exercises.

Caesar’s condition could be almost completely cured if he receives a bone marrow transplant.

(National Geographic/Screenshot)

So, in 2014, not long before his third stroke, his parents decided to have a third baby (Caesar also has a younger sister), who would be able to be a bone marrow donor.

The baby girl, who was named Helen, had the blood cells from her umbilical cord saved for the transplant. She was conceived via IVF to make sure she did not carry the sickle cell gene and was a match to Caesar.

(National Geographic/Screenshot)

Though they now have a beautiful baby girl, and the cells needed to cure Caesar, they were unable to afford the medical costs of the transplant operation.

For three years, they have been trying to raise funds via a GoFundMe page, hoping 2017 would be the year they could finally afford the operation. But sadly it was not.

Until the time when Caesar can have his transplant he will continue to be an icon of strength and perseverance, inspiring people one string and recital at a time.

Watch Caesar’s story below: