Family of Akins High School senior raises awareness about disease that led to his death

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AUSTIN (KXAN) — The family of Isaac Villafranca raised money and awareness Saturday about the immune system disease that took the high-schooler’s life this week.

“No one should have to go through what Isaac went through,” his stepmom, Celeste Villafranca, told KXAN during an event to sell plates of food to pay for his funeral expenses and research into the disease.

Isaac was 17, a senior at Akins High School in south Austin, when a cancer diagnosis turned his world upside down. He complained of shoulder pain, and doctors found a germ cell malignant tumor in his chest.

He underwent surgery for 10 hours on Sept. 26, and everything looked good, Villafranca said. A few days later, though, he developed a fever that wouldn’t go away. It took a few days for doctors to diagnose him with HLH Syndrome, short for hemophagocytic lymphohistiocytosis.

“They did everything they could, but Isaac was so sick,” Villafranca said. “The doctors told us this is rare on top of rare.”

HLH turns the body’s immune system against the body itself, destroying organs and bone marrow. The rare condition was triggered by the cancer, one of two ways it can manifest.

Isaac’s HLH diagnosis came on Oct. 5. and five days later, he died from the immune system disorder.

“It happened so fast,” his aunt, Freedom Garcia, said.

Garcia remembers her nephew as “a great, wonderful kid who inspired so many.” Now she’s helping to inspire more research into HLH.

She joined Villafranca, plus Isaac’s biological parents and stepdad, in cooking up burgers to sell to raise money. In addition to funeral expenses, the family wants it to go to better diagnosis and treatments.

There are two GoFundMe pages set up to accept donations: one that his sister initiated during his cancer treatment to help pay the bills and one Villafranca set up after his death.

“We just want to… prevent this from happening to another precious life,” Garcia said.

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