CCA student with rare disorder starts foundation for Wolfram research, living life to fullest
Ellie White is a lot like many teenagers her age. She’s a college student who’s discovering her educational interests and what kind of career she wants to pursue. She loves to dance. And, like most 18-year-olds, she enjoys spending time with her friends.
But White is also a one-in-half-a-million gem: The Community College of Aurora sophomore, who’s pursuing a degree in psychology and wants to go on to earn a doctorate in clinical therapy one day, has Wolfram syndrome.
Wolfram syndrome is a rare genetic disorder characterized by childhood-onset diabetes mellitus (which prevents the production of insulin), diabetes insipidus (which causes constant thirst), and progressive vision loss due to degeneration of the nerves that carry information from the eyes to the brain. Other symptoms may include deafness, coordination and balance problems, seizures, a loss of the sense of smell, anxiety, and depression, among others. Only one in 500,000 people worldwide has Wolfram syndrome, according to the U.S. Department of Health and Human Services. Also according to DHHS, the average life expectancy for someone with the disorder is 30 to 40 years.
Present her with these statistics and the teenager doesn’t flinch. “I was raised by my parents to be very, very resilient,” White said. “One of my sayings is, ‘I have Wolfram syndrome. It doesn’t have me.’ I’m fighting it and I’m not going to let it keep me on my seat.”
Indeed, when White was diagnosed with Wolfram syndrome at the age of 7 — at the time, she was the only person in Colorado with a diagnosed case of the disorder — it wasn’t the end for her; it was only the beginning.
She started a nonprofit organization, called the Ellie White Foundation for Rare Genetic Disorders, to help raise money for Wolfram research. To date, her foundation has raised nearly $300,000. All the money goes to Fumihiko Urano, a professor of medicine at the Washington University School of Medicine in St. Louis, whose main focus is to discover a cure for juvenile diabetes and genetic forms of diabetes, including Wolfram syndrome, using stem cell-based therapeutics and gene-based diagnostics. The money raised by White’s foundation made possible the world’s first clinical trial for people with Wolfram syndrome. “I was ‘patient 001’ in the trial,” she said.
White was diagnosed with diabetes at the age of 3, which means she has to monitor her blood sugars 24/7. She’s color blind. She’s legally blind. The disorder she goes to sleep with and wakes up with every day is progressive and terminal. But the humble and resilient teenager is able to see the good in it all, saying Wolfram syndrome “has opened so many doors for me.”
One of those doors is dance, which White discovered a deep love for at an early age. “With dance, you have to always be watching the people around you and aware of your space, so it’s slowing down the progression of my vision loss,” she said. “You also need to be able to hear the music and a lot of coordination is involved, which I really like. Besides that, dance is just such a great emotional tool. You can get your emotions out and be free.”
In 2011, her dance group, The Silhouettes, took second place in season 6 of the televised talent show “America’s Got Talent.” While on the show, White talked to America about Wolfram syndrome and encouraged viewers to learn more about the disorder and donate to research. “That was the first time Wolfram syndrome was ever mentioned on national TV,” White said. A few years later, in 2013, she was a guest performer in the Broadway musical “Elf.”
While White’s love for dance is unmistakable, she still called it her “second love.” Her first love: public speaking. She speaks at events every year across the country, laboring to ensure that Wolfram syndrome and those who have it don’t go unnoticed. “I want to show people that Wolfram syndrome is a real thing and that we really need help,” she said. White also puts on a 5K race every year called Ellie’s Quest for a Cure.
Having Wolfram syndrome has also enabled White to discover strength not even she thought she had. In August, while on a family vacation in Hawaii, one of White’s advisors at CCA, Nnena West, called her and said she thought White would make a great candidate for an upcoming trip to one of Aurora Sister Cities International’s sister cities, Seongnam City in South Korea. The application deadline was in two days, and so, sitting on a beach more than 3,000 miles away from home, White diligently answered the 17 questions on the application. She was selected to go on the trip.
The trip brought together youth ages 15-19 from the U.S., China, Germany, Japan, Korea, Singapore, Thailand, and Vietnam for the 3rd International Youth Conference, which took place October 28 to November 5. The group of more than 100 students — which included 10 from Aurora — discussed entrepreneurship, employment, and what their lives will look like in the future. They also visited a palace in Seoul and the headquarters of video game developer NCSoft.
“It was a very eye-opening experience for me,” White said. “I’m just so grateful to have had that opportunity.”
White enjoyed her time in South Korea so much that she’s already applied to go on the Aurora Sister Cities next trip to Jaco, Costa Rica, in the summer.
“With my medical condition, I never saw myself traveling, especially around the world, without my parents or a nurse,” White said. “The trip to Seongnam City was a huge success in my life, knowing that I did it, nothing went wrong, and it wasn’t scary.
“I want to show people that even though they may have struggles, life is still possible.”
Donations to White's foundations can be made through her website.