A Child Prodigy, a Painful Disease, and a Life-Changing Treatment
March 12, 2015 - Caesar Sant of Winston-Salem, North Carolina, began playing the violin at age two and as a toddler amazed his music teachers with his advanced abilities. But by the age of five, he had suffered three debilitating strokes due to sickle-cell anemia. His third stroke left him unable to walk or play the violin. Now, as he tries to regain his musical abilities, he has a newborn sister who can provide a bone marrow transplant that could be lifesaving and could ensure he'll always be able to play the violin. Visit Caesar's
Bone Marrow Foundation page and his
GoFundMe page for more information.
Transcript
LUCAS
SANTOS: Every man who has a dream of having
a child dreams of a child like Caesar.
You look at him and you just say, “I cannot believe that he is sick."
Since early on, you see he loves music.
Music is the most important thing.
You see kids twelve years old playing what he was playing
at four.
I'm always saying that the violin helped save his life.
CAESAR:
No. I don’t want any blood. No! Mommy!
ALINE SANTOS: For one week he was
fully paralyzed.
He could not even speak.
And he would just look at everybody, like moving his eyes.
We realized that he loves music.
And we put music on for him, but when he heard the violin, you could
see tears in his eyes.
His face was just that big question mark, "Why?"
MARIA ANITA: This is a cool balloon!
CAESAR: Wow! A Bear!
Maria
Anita!
MARIA ANITA: It's mine, Caesar.
CAESAR:
No, it's
mine too.
MARIA ANITA: No! It's mine.
CAESAR:
Why I cannot walk?
ALINE SANTOS: When he started to speak again, he would
ask, "Why can't I move?" "Why am I sick?"
DOCTOR:
Kick me. Can you kick me? Kick me.
LUCAS SANTOS: This was the most
difficult question to answer because what can you say?
CAESAR: I can’t
walk.
LUCAS SANTOS: You see your
child, five years old, crying to you not of pain but of sadness—that
is very tough.
Everything was dark. Everything was dark.
I love this boy too much. If my boy would go, I would have no other thing.
CAESAR: You are crying. Are
you crying?
LUCAS SANTOS: Of happiness.
LUCAS SANTOS: At four years
old, he had the first acute stroke.
About six months later, he had another one.
We said, "Well, we have to do something urgent."
That’s baby’s bottom… and you have a
girl!
ALINE SANTOS: When the doctor called and said,
"You have one embryo that is fully matched to Caesar and doesn't
have sickle cell anemia."
I felt like it was Christmas, and I just got the best gift.
Because even though he was doing fine, we know
that anytime, something can happen to him.
And when we were 12 weeks pregnant, he had the third stroke.
And after the ultrasound, Maria Anita looked at him and said, "Caesar, you
have to be strong, because we’re gonna have a baby.”
LUCAS
SANTOS: You have to stand up. Up! Up! Up!
LUCAS SANTOS: I took him to the hospital
the night of May 31st.
I brought him home on July 24th, and he was not walking.
Caesar spent about five months without walking by himself.
CAESAR:
Up… Down… Up… I’m walking!
Right after the hospital, the first day I took him to the violin lesson, he
was crying because was not able to play.
CAESAR:
I want to walk for Miss Amelia, Papis.
LUCAS
SANTOS: You did pretty OK, Caesar!
CAESAR: OK is not
good. OK is bad.
LUCAS SANTOS: No. OK is not bad. All is not good,
this is OK.
CAESAR: No I don’t like “OK.”
Just “very good.”
AMELIA
WEESNER: Thank you, Caesar.
CAESAR: Thank you, Miss
Amelia.
LUCAS SANTOS: The care for
pre-transplant, the transplant itself, and the post-transplant, the whole thing is
very expensive.
A case exactly like this one was done in Florida and cost half a million
dollars.
You don't know what the insurance is going to pay.
But a life is on the line, so that's the scary part.
CAESAR:
I am really happy! Because Baby Helen
is gonna be my best friend.
LUCAS SANTOS: When this child is
born, you'll take the umbilical cord as material for the transplant—the only
way to avoid another incident that could kill him.
The transplant has a 95 percent chance of curing him
of sickle-cell anemia.
LUCAS
SANTOS: You are my hero, Mama.
ALINE SANTOS: Sometimes they say,
"Oh did you genetically modify your baby?" No.
We did not decide to have this baby just for the transplant.
Because the transplant itself will take only the cord blood.
And this baby will come to our family and will be loved and will be part of us.
She already is part of us, even when we started this whole procedure.
CAESAR:
Papa!
LUCAS SANTOS: I
brought Baby Helen for you!
ALINE SANTOS: I don't have words to explain
what it is like when you see your child in pain, and you feel like I could
prevent it.
CAESAR:
Baby Helen! I’m Caesar.
ALINE SANTOS: One day Caesar was
really sad because he told me, "I can't walk."
And I said, "You know what? When the baby is born, the baby will give you
a gift, and you won't be sick anymore. Never!”
CAESAR: It’s OK, Baby
Helen.
ALINE SANTOS: She will give him his life back.
LUCAS SANTOS: Every
house has a light.
The light is not supposed to be gone.
If the light is gone, the life in the house is gone.
This light is power.
No matter how desperate you are, no matter how hellish this situation
looks like, we will make it.
I told him, “Caesar be
strong, we will make it.”