Xavier’s Story

Xa & Scooter

Xavier Alexander Atienza (XA) was a dazzling, vibrant, and bright light, who had the gift of bringing exuberant joy and smiles to all who met him. Xavier lived every day to the fullest and exuded boundless energy. By the time he was 9 years old, Xavier had accomplished so much. He earned his first degree black belt in Tae Kwon Do, danced in a performance at the Smithsonian National History Museum, studied Chinese Mandarin in school, performed in various ballets and dance concerts around the National Capitol Region, and was chosen to be videotaped dancing at one of the Washington National’s baseball games that was then shown on the jumbotron. He had a magnetic personality and a charming smile. Xavier loved donuts, bacon, roller coasters, dancing, skateboarding, basketball, soccer, riding bikes, and giving big bear hugs (especially to his big sister and parents).

About Xavier’s illness: Xavier’s illness came on suddenly in late August 2013. On September 2, 2013, Xavier was rushed to Children’s National Medical Center where he suffered his first seizure. He was diagnosed with encephalitis (brain swelling), but the cause was unknown. The doctors placed him in a medically induced coma to protect his brain, as he started having uncontrolled seizures. Despite extensive medical assessments and the help of medical doctors and clinical researchers across the United States and around the World, a cause of the encephalitis affecting Xavier was never found. For lack of a better diagnosis, medical researchers labeled Xavier’s symptoms as consistent with Febrile Infection-Related Epilepsy Syndrome (FIRES). FIRES is a very rare syndrome, affecting 1 in 1,000,000 children, and is described as an explosive-onset, potentially fatal acute epileptic encephalopathy that develops in previously healthy children and adolescents following the onset of a non-specific febrile illness. Treating FIRES medically is difficult because the cause is often unknown. Xavier fought heroically for 4 months, until the time of his passing on January 12, 2014.

From NIH & StoryCorps Project: