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Making the best of a nightmare: Ventura County family seeks cure for deadly childhood disorder

Chavez Family
Little Jaxon Chavez, with parents

Family launches local campaign to support efforts to develop treatment for rare disease.

He is a Ventura County couple’s dream come true.

He’s the child they always wanted to have.

But, for Sofia and Craig Chavez, it’s a dream that’s gone terribly wrong. Their two year old boy, Jaxon, has been diagnosed with an extremely rare, terminal disease.

"Absolute worst nightmare," said Sofia Chavez. "You're seeing him fade every day."

The Moorpark couple dedicated their lives to kids, other people’s kids. Sofia Chavez is Vice Principal at Newbury Park Adventist Academy, and Craig Chavez is a Special Education Teacher at Malibu High School. So, when they found out they were going to have a baby, they were thrilled. Jaxon, who they call JJ, was born in March of 2020.

"When he was born, he passed all the basic genetic screenings," said Chavez. She says he was crawling, walking, and talking.

But, late last year, they noticed JJ was having some problems. He started falling, and was speaking less.

An MRI showed he had an extremely rare genetic disorder, affecting his brain. Toxins were attacking his brain. The rare disease contained elements of muscular dystrophy, cystic fibrosis, and Alzheimer's disease.

Chavez says when they asked about treatments, the news was bad. There isn't one.

Chavez Family

JJ has lost most of his verbal skills, and can’t walk. Chavez says despite his issues, he’s a happy child. He’s currently going to preschool, but his parents say the time will come when they will have to care for him full time at home. That’s going to be difficult since they are both educators, and can’t work remotely.

The prognosis isn’t good. Children with the disease rarely make it to ten years old, and most develop major health issues like the inability to walk, or even eat by age four.

The news has been devastating, but the family is trying to make something good come from the situation.

The family launched a fundraising campaign to support research efforts. It’s goal was $5,000, but it’s already raised $25,000. And Friday morning, Hundreds of people are gathering at Newbury Park Adventist Academy for a fundraising run, and festival Friday morning benefitting the United NSD Foundation.

Lance Orozco has been News Director of KCLU since 2001, providing award-winning coverage of some of the biggest news events in the region, including the Thomas and Woolsey brush fires, the deadly Montecito debris flow, the Borderline Bar and Grill attack, and Ronald Reagan's funeral.