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Our kids inspire us to fight to defeat DIPG.

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Family Partner

November 22, 2015 – October 7, 2021

Diagnosed: October 10, 2020

Written by Jacob’s Family

Jacob was born on November 22, 2015, filling our lives with boundless joy, love, and a bit of magic. His adventurous heart, infectious laugh, and a smile that could light up any room made every day brighter. He was passionate about superheroes, especially Captain America, and we even dedicated a room in our home, The Avenger Room, filled with all the Marvel characters.

He loved giraffes, magic, Legos, and rainbows. Watching people do backflips always lit him up with excitement. His favorite treats included chocolate, donuts, chicken nuggets, fries, and lemonade. His favorite colors were blue, red, and gold. All memories of which one day we would cherish.

A big part of Jacob’s life was Mr Puddles, a small stuffed tuxedo Kitty. Jacob was inseparable from him, taking Mr. Puddles everywhere. He was a constant companion through all the moments, big and small, bringing him comfort every step of the way.

We had no idea that Mr. Puddles would become a lasting symbol of Jacob’s presence in our lives.

In October 2020, our lives took a devastating turn when our beautiful little boy, Jacob, was diagnosed with DIPG at just four years old. It all began when we noticed something wasn’t right — Jacob developed a persistent head tilt, began tripping, his eye became irritated, and he started drooling. Concerned, we took him to the ER at San Antonio Regional Hospital, where a CT scan revealed a mass on the left side of his brain. We were immediately transferred to Loma Linda Hospital. The neurologist, though hesitant to say too much before an MRI, suspected something serious. We braced ourselves as we waited for the MRI results, feeling utterly broken.

A few days later, the neurologist delivered the crushing news: Jacob had DIPG, a rare and inoperable tumor in the brainstem. DIPG affects the essential functions of breathing, seeing, and moving, making surgery impossible. Radiation was our only option, but even that came with no guarantees. As the doctor explained the reality of the situation, Jacob lay in his hospital bed, finally happy to be eating pizza after fasting for more than 25 hours. The joy in that moment contrasted sharply with the unimaginable pain we felt. We were told that even with treatment, Jacob’s time with us would likely be limited to 9 to 15 months.

Jacob endured six weeks of Proton Therapy, a type of radiation. Every day, he fought bravely through constant headaches and vomiting. His condition worsened—he lost the ability to walk or even sit on his own, and his speech slowed to the point where it was difficult to understand him. It was heartbreaking to see his frustration, but through it all, his courage and strength never wavered. He continued to find joy in small things, showing us his playful and silly side whenever he could.

As bereaved parents, we’ve become Family Partners with the ChadTough Defeat DIPG Foundation to help other families battling this horrific disease. Jacob’s legacy, along with Mr. Puddles, lives on in everything we do. Incorporating Mr. Puddles into events and our ongoing journey helps us keep Jacob alive in our hearts and memories.

Jacob bravely battled DIPG for 352 days before passing away on October 7, 2021. Though our hearts are shattered, we honor Jacob every day by sharing his story—a story of strength, love, and the light he brought into our lives. We mark his birthday in creative ways, giving cookies with candles to family members so they can light a candle for him. We’ve bought a star in his name, planted trees in his memory, and on his Angelversary, we take the day off to spend the morning at the beach, Jacob’s favorite place. The beach was where we went after he was cremated, and it has since become a special place for us.

We keep Jacob’s ashes at home and always decorate his area for the holidays. Each year, we form “Team Jacob and Mr. Puddles” and participate in the SoCal National Brain Tumor Society Walk, continuing to fight in his memory. Though Jacob is no longer with us, we carry his spirit with us every day, determined to keep his legacy alive and make a difference in the fight against DIPG.

 

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.