Sensational 8-year-old violinist living with painful disease

An 8-year-old violinist with a remarkable talent...and a painful disease.

Sensational 8-Year-Old Violinist Living With Painful Disease

WINSTON-SALEM, NC – It’s hard to walk through life without hitting a sour note or two. In Winston-Salem, there's a young boy with talent beyond his years and a disease that nearly crippled him. His father gave up his career to take care of his son and to get him healthy.

Child Prodigy

“We only listen to classical music at home, said Lucas Sant, a father of three living in Winston-Salem. He sits with his youngest, Helen, 2, on his lap. His second oldest daughter, Maria-Anita, 7,  sits on his right and his only son, Caesar, 8, sits to his left.

He’s telling WFMY News 2’s reporter, Hope Ford, about his son’s remarkable talent.

“When he was just a baby, we bought Baby Einstein, and you know, they have the animals and the music. So, we bought him a little toy piano,” Lucas began. “And one day, when he was seven months old, we heard this music coming from the room. It sounded like the toy piano, but it was the music from the Baby Einstein.”

Lucas turned to his wife, Aline, with a knowing smile and said, “We have our work to do with this boy.”

Videos uploaded to YouTube, show a baby Caesar, waving his arms along to classical music such as Beethoven, almost as if he were conducting a symphony.

Violin lessons started the age of two.*

“He started playing Vivaldi. He would pick up things very quick,” said Lucas. “Everybody was very impressed.”

GoFundMe

All the Sant children are homeschooled and it would be no surprise to learn Caesar is just as brilliant with a pencil as he is with an instrument. The young boy is ahead in math and other subjects and earned a black belt in karate at 5-years-old.

A Painful Disease

Lucas sat in his seat, as baby Helen decided she wanted to leave the room to see what her mom was up to. As she ran into the next room, Lucas continued his story.

“Immediately, he started to get sick. Before five, he had the first stroke.”

Caesar has sickle cell anemia.

“You never know anything until you experience,” Lucas said in a soft voice.

Sickle cell anemia is a blood disease. Normal red blood cells are round and flexible to carry oxygen throughout the body. Caesar’s blood cells are sickle-shaped or bent and get stuck, slowing the flood of blood and oxygen.

Lucas explained, “It’s different. It’s my son and I never seen this thing.”

Caesar, who up until this point sat quietly next to his father with his violin in his lap said, “I feel bad. I don’t feel good when I’m sick.”

The curly haired violinist has three strokes before the age of six. The first two left his arms weak, but he rebounded, performing the National Anthem at the Grasshoppers Game in 2013.

“The third one was a different stroke,” said his dad.

Caesar lost feeling in his arms and legs after his third stroke, leaving him partially paralyzed for nearly six months.

“At first, even his eyes was not moving. But, when he did wake up, all of a sudden your son not walk, not run, not stand up,” Lucas said as if he was still trying to make sense of it all.

Doctors told the Sant family, “It is very unlikely your son is going to die but do not expect much from him.”

Lucas paused for a moment and continued, “But the good thing there, you really meet God. What am I supposed to do God? Please tell me.”

The only thing that seemed right at the time, was for Lucas to give up his career. The father of three was a neuroscientist at Wake Forest Baptist Medical Center.

“Forget about my life. I said, I’m going give my life to this boy.” 

The Sant family built a small play gym in the basement of their home. Here, Lucas would help Caesar with physical therapy, as they could not afford to hire someone full time to help him regain strength and movement in his arms and legs.

Some days and good and some are bad. Three years after his last stroke, Caesar still winces in pain as he goes through his exercises. But, he finds moments to laugh with his siblings, who cheer him on. And as an 8-year-old, he is a little hard to get under control. For Lucas, the physical therapy takes a toll on his as well.

“First, I’m not a physical therapist. I have a lot of patience but it’s very hard for you see your son one way,” said Lucas.  “Sometime, we have to take breaks because it is difficult and it sometimes weighs on my own health.”

But, once again, Caesar regained his strength, returning to the Grasshopper’s stadium in 2017 to perform the National Anthem once again.

A Small Miracle

Every month, Caesar and his family travel to Charlotte for blood transfusions to lower the risk of Caesar having another stroke. He'll have to do this for the unforeseeable future and there are risks.*

Frequent blood transfusions can lead to iron overload which is sometimes fatal. Caesar's family is trying for a bone marrow transplant which has a higher percentage of curing his sickle cell disease.

They have a donor- his baby sister, Helen.

As if she knew her name had been mentioned, the young girl, called the boss of the family, walked back into the room, sharing bites of her rice with her siblings and father.

Lucas and his wife wanted another child, but they also wanted to ensure the next child would not have the sickle cell anemia trait. they also wanted to ensure they would have a 100 percent genetic match for Caesar's procedure.

Maria-Anita was also born with sickle cell anemia, but unlike her brother, has yet to experience any complications.

So, Aline got pregnant via in vitro fertilization. Doctors only planted cells that were a genetic match and only healthy cells were selected. Thus, Helen was conceived and at birth, her umbilical cord was collected.

Helen, was born sickle-cell free.

“They took the stem cells from the umbilical cord and now they have perfect cells, to do the transplant on him,” said Lucas.

The Next Step

The Sant family is trying to raise money for a bone marrow/stem cell transplant. The process is long and costly. According to Johns Hopkins, one hospital that specializes in bone marrow/stem cell transplants, they say the cost can run as high as $500,000.

However, sickle cell anemia can be cured with the procedure.

Offering her big brother another big of food, Helen, Caesar’s sisterly hero, smiled and ran off.

Lucas continued to explain the family’s financial situation.

“It’s difficult, with me not having a job. But, we have had people help us along the way. But, we are still trying so hard to raise money for the surgery.”

A GoFundMe account was started in 2013. To date, $38,000 has been raised. The family also started a website to give updates and sell merchandise to help raise funds as well.

Caesar still walks with a limp and must be careful when sitting down. Lucas looked at his son and said “We’re so happy because he got back. He got back, but the job is not done. Faith, hope, these things so real. Cause if don’t have what you can do? You give up right there.”


Caesar piped in again, “Sometimes I tell my father, papa, I don’t know when I’m going to be back, but God is always with me.”

Lucas isn’t giving up. His hope, to have son healthy by 2018.

And Caesar’s hope?

“I want to be a musician and a conductor.”

*This story has been updated to correct information. Lessons for Caesar started at the age of 2 and 300ml of his blood is replaced every month during his blood transfusions. 

5 Facts About Sickle Cell Disease (CDC)

 

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