Sapulpa Girl To Be First Person In Wolfram Syndrome Clinical Trial

A Sapulpa teenager is making medical history. She has an extremely rare disease with no known cure. However, she's hopeful about a new clinical trial.

Kadence Wood said this is the most hopeful she's felt in the four years since she was diagnosed.

Kimberly Wood remembers exactly when she knew something was wrong with her daughter, Kadence.

"I had picked up a blue shirt and she was like 'you know I don't like purple,'" Kimberly said.

Instinct told her something was wrong. After many tests, the news from doctors was something unexpected.

"The doctor told us I had Wolfram Syndrome and we didn't know what that meant," Kadence said.

Wolfram Syndrome is so rare, one of Kadence's doctors had to Google it. Every one in 500,000 people are diagnosed with it. It usually starts with Type 1 diabetes.

"Its awful. Everything about it is awful. It says she is going to go blind, going to go deaf, she is going to have seizures and she is going to die at a young age," Kimberly said.

It's been four years since Kadence was diagnosed. While there isn't a cure, Kadence and her mom never lost hope.

One year ago they found a clinical trial through the Washington University School of Medicine. They hope this is the answer they have been searching for.

In the next couple of weeks, Kadence will go to St. Louis for the trial. Kimberly is terrified, but hopes it will save her daughter's life and help others.

"People are going to benefit from this because the medical world will finally know what Wolfram is and maybe the next person that gets diagnosed, their doctor won't have to google it," said Kimberly.

"This could not only save my life, but could save so many others," said Kadence.