Woman faces terminal illness with resolve

BY DANA KNOWLES AND JEREMY MOORE ROCKY MOUNTAIN PBS

How do you show up for life and all it can potentially o er when you’re only 21 years old, knowing you may only have a few years left?

at’s a question Ellie White asks herself almost every day.

She was born with a rare neurodegenerative disease called Wolfram syndrome, which causes diabetes, blindness, hearing loss, and eventually it a ects the brain stem, resulting in respiratory failure at an early age. With no current cure, the life expectancy of someone with Wolfram syndrome is typically between 25 and 40 years.

“Eventually my body will forget how to breathe, and I won’t be able to breathe, which makes this disorder a terminal disorder,” White said, adding that dying at a young age is di cult to contemplate, even for her. “I want to get stu done. I want to live life.”

In fact, she is — getting stu done and living life — as best she can.

White nds joy by surrounding herself with family, friends and pets at her home in Centennial. She is also studying music therapy at Metro- politan State University of Denver. Over the last several years, she has performed with her dance group, e Silhouettes, on the television show “America’s Got Talent” and she traveled to Washington, D.C. for the inauguration of President Barack Obama. ese are things that are paramount for her, as much of her time is also spent traveling out of state to meet with various specialists for what can feel like constant medical testing.

“I just went to St. Louis and was there for ve days. I had doctors appointments from seven in the morning until three in the afternoon. I did cognitive exams like memory and speech, taste tests, smell tests and blood work,” she added.

Wolfram syndrome is considered an orphan disorder, which means it is extremely rare and there is not a lot of research for funding to help nd a cure, and there is no treatment for it yet.

Ellie’s mother, Beth White, a molecular biologist at the University of Colorado Anschutz Medical Campus and the school of medicine’s infectious disease department, is trying to change that. And she feels her background in research can help.