Central Valley boy doesn't let rare genetic condition stop him from living life

FRESNO, Calif. (KFSN) -- Nearly 1 million people worldwide are living with a rare genetic disease that causes non-cancerous tumors or lesions to grow in the brain or around the body.

It's called Tuberous Sclerosis Complex, or TSC.

The disease affects about 50,000 people in the U.S, including one Central Valley boy.

River Bechdoldt is 10 years old and loves going to the park to play on the swings.

He's also very curious and wants to explore the world around him.

"He loves going everywhere," said Jackie Bechdoldt, River's mother. "His thing lately is looking at maps and directions. He wants to know how far things are, where they are."

The future of River's life adventures took a turn in December 2015 when he was diagnosed with TSC at two months old. River's father is also diagnosed with TSC, but lives with the condition differently.

"We took him into the ER and let them know about my husband's diagnosis," said Jackie. "They immediately brought in the neurologists, and it was seizures. They diagnosed him with Tuberous Sclerosis Complex after an MRI."

According to the TSC Alliance, the genetic disease affects 1 in 6,000 live births. Symptoms of the disease begin at a young age, which can include seizures and developmental delays, some of which River deals with.

But the genetic disease doesn't define River.

"At my grandparents' house, we actually write songs together," said Willow Bechdoldt, River's sister. "They're very interesting songs. I let him do his own thing."

He's still just like every other kid. Willow describes her brother as smart and kind.

The family plans to participate in the TSC Alliance walk in Southern California in June. While there is no cure for the disease, Jackie says they're not giving up hope and will never stop fighting for a cure.

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