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Our kids inspire us to fight to defeat DIPG.

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Gordie White is a remarkable and courageous 4-year-old boy who lives in Canada. Filled with boundless energy, he loves hockey and is obsessed with his dad, former NHL player Ryan White. But Gordie’s world changed forever when he was diagnosed with DIPG on February 18, 2022. Before that fateful day, Gordie had been living a carefree life, cherishing the joys of childhood and embracing his role as a big brother to his little sister, Molly.

In January 2022, the White household was hit by Covid. Gordie’s symptoms seemed mild at first, but a few weeks later the right side of his face began to droop, and his speech became slightly slurred. Concerned, his parents, Ryan and Sarah, took Gordie in for a checkup where two physicians diagnosed him with Bell’s palsy, a potential side effect of Covid. After a week of prescribed steroids, Gordie seemed to improve. But just two weeks after finishing the steroids, Gordie’s speech began to slur once more, and he started dragging his left foot. The family returned to the doctor, and it was then that the family’s nightmare truly began.

“A CT scan confirmed that there was a mass in Gordie’s brain,” remembered Sarah. “No one would tell me exactly what that meant, and we were sent to the Children’s Hospital of Winnipeg in Manitoba. The next morning Gordie underwent an MRI, and within moments, the devastating truth of his diagnosis shattered our lives and our hearts into a million pieces.”

The family immediately began the challenging journey of six weeks and 30 rounds of radiation, making Gordie one of the youngest patients to undergo such treatment in Winnipeg. Gordie faced each day of treatment with a smile, arriving at the hospital every morning at 6am, ready to face whatever lay ahead. His steadfast positivity became contagious, uplifting his family and fostering a united front of unwavering support.

Once Gordie completed treatment, an MRI revealed his tumor had shrunk by more than 50 percent. With renewed hope, the family embarked on a journey to Rochester, NY, where for the past 10 months, Gordie has been enrolled in ONC201, a phase 1 clinical trial. 

Gordie has regained 100 percent of his mobility, allowing him to embrace the life of a 4-year-old and hit the hockey rink with his dad once again. He attends preschool, mischievously gets into trouble with his cousins, and excels as an older brother. He remains a beacon of inspiration for his family, who are determined to fight fiercely to save their son.

“He doesn’t give up,” Ryan said. “We’re not going to give up either.”

 

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

What is ChadTough Defeat DIPG?

Learn about our founders, mission, and impact.