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Ellie White
Learn about Wolfram Syndrome

Ellie White at the Inauguration

Ellie White 11 year old with <a href=Wolfram Syndrome One day when she was three years old Ellie White got thirsty...so thirsty that it concerned her mom enough to take her to the pediatrician. She was tested for and found to have Juvenile Diabetes. Ellie's test registered above 400, normal being less than 100.

Their lives would be different forever. Ellie's mom, Beth, was taught how to poke her daughter's finger to check her glucose. She had to do that every two hours around the clock. She was taught how to give Ellie shots to manage insulin.

Ellie's mom is a molecular biologist. True to her scientific nature, she researched Type 1 diabetes. She worked with Ellie's doctors to find the best approach to help Ellie.

In the meantime, Ellie was doing her best to help others. Each year Ellie cuts the ribbon for the Juvenile Diabetes walk a team walks in the Denver JDRF Walk to Cure Diabetes in honor of Ellie's birthday. The walk is right around the time of her birthday, so she asks everyone to be on her team instead of giving her presents. Ellie has raised $30,000 to help find a cure for Juvenile Diabetes.

When Ellie was seven she had a routine eye exam. The doctor was unable to correct her vision to 20/20 and tests showed she also was colorblind. As a result, further tests were recommended. Ellie was found to have Wolfram Syndrome, a rare genetic disease, so rare that chances of getting it are one in 700,000. When Ellie was diagnosed she was the only person with Wolfram Syndrome in Colorado.

Wolfram Syndrome causes blindness, hearing loss, and eventually it affects the brain stem, causing respiratory failure at an early age. With no current cure, the life expectancy of a patient is typically less than 30 years.

On Ellie's 11th birthday, she could no longer see the colors on her cake, but she sees everyday as a gift.

Once again Ellie The Silhouettes preform on America's Got Talentwanted to help. Her dance group, The Silhouettes, came in second on "America's Got Talent" sixth season. She used this public platform to bring awareness to Wolfram Syndrome. "Even though she's losing her hearing and vision, she can dance. On ‘America's Got Talent' even," Beth White, Ellie's mom said.

A film maker, Jocelyn Leroux, was touched by Ellie's story and approached Ellie's mom, Beth, and asked her what she thought of a documentary on Ellie and Wolfram Syndrome. Beth explained that she would do anything to help her daughter. The documentary is now in production. Here's the trailer.

Beth established The Ellie White Foundation. Money donated to the foundation will go to research to find a cure for Wolfram Syndrome and other orphan diseases.

Ellie White preforms in Elf The Musical on Broadway
In January of 2013, one of Ellie's dreams came true. Broadway was transformed into The Great Ellie White Way. Ellie preformed in "Elf The Musical" Read what the "Daily News" has to say about the event.


Ellie White holding her tickets to President Barack Obama

Another wonderful thing that happened to Ellie in January was attending the Inauguration of President Barack Obama. Beth White shares their adventure.

 

 

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