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Our kids inspire us to fight to defeat DIPG.

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Donation Total: $60.00 One Time

Family Partner

October 30, 2019 – October 31, 2023

Diagnosed: February 1, 2023

Written by Theo’s Family

Theo lit up our lives from the moment he came into this world. A wide-eyed, curious baby, he grew into a happy, inquisitive, playful kid; one who marveled at the moon, danced with zero inhibitions, and knew the names of every type of truck in existence. He ran fast, felt deeply, laughed loudly, and had a big, confident voice that carried across any space he was in. He was effervescent and magnetic; to know Theo was to love him.

We couldn’t believe how lucky we were that he was ours. We couldn’t wait to see who he would become. 

On February 1, 2023, we watched his future – and ours – crash to the ground in a single moment. His center of gravity had been slightly off-balance for a couple of days, and on a Tuesday afternoon, when his words sounded slurred, we immediately took him to the ER. The next day, an MRI revealed every parent’s worst nightmare. Our three-year-old son had a brain tumor. DIPG. Cancerous. Inoperable. Incurable. Less than a year to live. 

Within 3 days of diagnosis, Theo lost the ability to walk, talk and swallow, and was in critical condition. Over the next 9 months, we fought the battle of our lives, pursuing every treatment option under the sun to bring our son back, restore his quality of life, and try, against all odds, to save him. With radiation, alternative therapies, and cutting-edge drugs still in trial, Theo’s tumor shrunk significantly and he slowly began to improve – regaining control of his body, his ability to speak, and eventually, his ability to walk. The 9 months of his illness were filled with magical experiences and heartbreaking setbacks, trips around California and trips to the hospital, deep joy and deep pain. Each day felt achingly precious. Every hour carried infinite weight. 

On his fourth birthday, in the early hours of the morning, Theo unexpectedly suffered a massive brain bleed from his growing tumor and lost consciousness for the last time. In a twist of inexplicable, profound symmetry, his death mirrored his birth; he was diagnosed with DIPG exactly four years after he was conceived, and died exactly nine months after. Nine months to bring him into this world, nine months to usher him out of it.  Theo spent his fourth birthday – his last day on earth – in a deep sleep, surrounded by our closest family at home as we sang to him, read to him, and said goodbye. He took his last breath just after midnight, as soon as his birthday was complete.

We all want our children to lead big lives, to make a difference in the world. Theo’s life was not long, but it was WIDE, somehow reaching people all across the globe.

We will never be able to make sense of his death, but we are determined to make meaning from it. We are honored to partner with ChadTough Defeat DIPG in hopes that one day in the future, children facing this horrific illness will not be handed a death sentence, but rather, hope and the chance for a future. 

 

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.