Voices of the NIH Community

“It was the scariest time in my life. Not knowing why Xavier was sick.”

Xavier Atienza was a nine-year-old who loved dancing, Tae Kwon Do, and annoying his older sister. He suffered his first seizure suddenly and inexplicably. He was diagnosed with encephalitis (brain swelling), but doctors couldn’t determine its cause, and he died four months later. Xavier’s dad, Audie, and sister, Xochitl, sat down together to remember their vibrant son and brother.


Xochitl Atienza: How did Xavier end up in the hospital and what happened to him during that experience?

Audie Atienza: Xavier got sick very suddenly.  He had a high fever.  He had headaches.  And about five days later, he started acting confused.  You remember that night?  It was pretty scary, wasn’t it?

Xochitl Atienza: Mmhmm.

Audie Atienza: So we rushed him to the hospital and he had his first seizure.  He was diagnosed with encephalitis, and encephalitis is when your brain swells.  And they didn’t know quite why.  We had some of the best doctors in the world, both at NIH and at Children’s Hospital, trying to figure out what was causing Xavier’s brain to swell.  And in January 2014 he passed away after fighting for four months.

Xochitl Atienza: Were you scared during the situation?

Audie Atienza: It was the scariest time in my life not knowing why Xavier was sick and not knowing whether he would make it.  I remember driving to the hospital the day after he was admitted and receiving the call from your mother that Xavier was having violent seizures.  And I remember being stuck in traffic and screaming and praying that I would get to see Xavier and that he would be okay, not knowing what was happening.  Even though I was scared, I had to be strong to take care of you and to take care of Xavier. 

Is there something about Xavier that you think nobody else knows?

Xochitl Atienza: Nobody knows that he used to practice flipping me.

Audie Atienza: [laughter]

Xochitl Atienza: And it hurt.  A lot, even though there were pillows on the ground.

Audie Atienza: He was a mischievous little boy.  He also made everybody just smile and laugh with all of his antics.  One thing I will always remember about Xavier is how much he loved to laugh.  And he would have these ridiculous giggles.  And he would like to just tell jokes and he just really loved life.  He really took every day and would jump out of bed to say, “What will be my next adventure?  And what will we do today?”  And I just loved that about Xavier.

This page last reviewed on February 27, 2023