South Austin family looks to raise awareness, funds, after son dies suddenly of rare disease

17-year-old dies of a rare disease

Shannon Ryan tells the story 17-year-old Isaac Villafranca who died of a rare disease and how his family is raising awareness for H-L-H.

AUSTIN, Texas - An Akins high school senior died, just days after being diagnosed with a rare disease.

Isaac Villafranca, 17, was admitted to Dell Seton Children’s Medical Center on September 24. There, doctors discovered he had a germ cell tumor -- they removed it on September 26. On October 5, he was diagnosed with Hemophagocytic lymphohistiocytosis syndrome, or “HLH” -- a rare disease. On October 10, he passed away.

“It’s horrible, it took him so quick, we were ready to have him home, now we’re here.” said Villafranca’s big sister, Eliyah Munoz.

“Here” being the parking lot of advanced auto parts, in South Austin. The family, held a benefit there, Saturday, to help cover funeral expenses. Isaac’s father, was unable to work, while he was ill.

“It happened too quick. It was a blood disease and it took his liver, kidneys and then next it went to his lungs. It was a hard battle. He fought it very tough. I’m gonna miss him and I wanna raise awareness for this disease.” said Isaac’s father, Randy Villafranca

A disease that impacts 1.2 people per million, according to a National Institutes for Health, or “NIH” study.

“We need more research to be done, and we need to get the word out there. Because, a lot of people, including us, we’ve never even heard of this disease.” said Isaac’s stepmother, Celeste Villafranca.

There are a lot medical professionals who do not know about the disease. It is believed that cancer can be a cause, and doctors believe it brought on Isaac’s case.

Isaac was an aspiring construction engineer, and “Aggie.” Those who loved him, remember him for the love he gave, his drive, and affinity for shooting hoops with siblings and neighborhood kids.

“Yeah he would be always watching us, now he can be watching us 24/7.” said Isaac’s young neighbor, Jacob C.

Munoz said, “he was younger than me but he always took really good care of me and made sure that I was okay.”

Now his family wants to make sure they take care of others -- in his honor.

We need to do something that way this doesn’t happen to any other families because, it’s, no family should ever go through anything like this or go through this. So it’s just, a piece of my heart is missing.” Munoz cried.

Donations can be made here.