‘I want to live life’: Facing a terminal illness, Ellie White raises awareness of Wolfram Syndrome [Video]

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

That’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 affects 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 difficult to contemplate, even for her. “I want to get stuff done. I want to live life.”

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

White finds joy by surrounding herself with …