One day when Ellie was just three, she got thirsty.
This unquenchable thirst landed Ellie at her pediatrician for testing. She was later diagnosed with Juvenile Diabetes. After this day Ellie's life would forever be changed.
Ellie’s mother, Beth, is a molecular biologist. True to her scientific nature she researched Type 1 diabetes and worked with Ellie's doctors to find the best approach to help her daughter. 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. The walk is right around the time of her birthday, so she asks everyone to be on her team in lieu of presents. To date Ellie has raised over $30,000 to help find a cure for Juvenile Diabetes.
Four years later when Ellie was seven she had a routine eye exam. During this exam the doctor was unable to correct her vision, so tests were ordered. Ellie was colorblind. After further testing Ellie was offically diagnosed with
Wolfram Syndrome, an ultra rare genetic disease that impacts only 1 in 700,000. When Ellie was diagnosed she was the only person with Wolfram Syndrome in the state of 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.
Ellie is now a young adult and continues to be an advocate for JDRF and The Children's Diabetes Foundation organizations. She has spread awareness about Wolfram Syndrome in many ways including being a guest speaker on multiple podcasts, PBS interviews, and annual presentations at Princeton University and other institutions. Ellie has embraced her blindness by attending the Colorado Center for the Blind and learned many life and independence skills while being a resident in their apartment program. She spoke on Capital Hill in 2022 and 2023 representing the National Federation of the Blind and is currently the President of the Colorado Association of Blind Students since 2023. She is living life to the fullest and is an inspiration to others by remaining active and enjoys walking, sky diving, scuba diving, white water rafting, hiking, camping, kayaking, and tadem biking. Ellie continues to support research and is patient "001" in a drug trial.
As Ellie grows,
so does her support...
