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Our kids inspire us to fight to defeat DIPG.

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#mattiesjourney
Family Partner

November 5, 2009 – April 10, 2021

Diagnosed: October 27, 2020

Mattie Jackson, of Chula Vista, California lost her life following a courageous battle with Diffuse Intrinsic Pontine Glioma (DIPG), a rare form of pediatric brain cancer. Diagnosed on October 27, 2020, Mattie’s journey with DIPG began with double vision that initially was attributed to excessive screen time during the COVID-19 pandemic. An MRI to rule out anything neurological revealed every parent’s worst nightmare – Mattie had DIPG for which there is no proven treatment or cure.

Shortly after the MRI, Mattie had a biopsy that confirmed a suspected H3K27M mutation and she also participated in a whole genomic sequencing trial. She completed 3 weeks of Hypofractionated radiation therapy and then participated in PNOC007, and immunotherapy trial, which included an H3.3K27M peptide vaccine with poly-ICLC, combined with the PD-1 inhibitor, Nivolumab.

Mattie’s 11 years were filled with lots of great adventures, experiences, and memories. Mattie had a smile that could light up any room and was a friend to all.

She had a love for learning that flourished during her pre-school years at Montessori American School and continued at Veterans Elementary School, where she was a 5th grader enrolled in a Dual Immersion program and was bilingual in English and Spanish. She was eager to go to school each day and enjoyed participating in all of the activities her school had to offer. She volunteered in classrooms, was a member of the Peace Patrol and enjoyed participating in the school’s annual talent shows with her friends, where they would show off their gymnastics talents!

During her early years she loved gymnastics and spent much of her free time at the gym, always self-motivated to meet her goals. Soccer became her true passion though and she enjoyed playing with many of her same teammates for four years at both Albion and Rebels Soccer Clubs.

Outside of soccer and school, Mattie loved spending time with her family and friends, including her puppy, Roxy, and her cat, Bubba. She was an extraordinary role model for her younger sister, Emily.

Mattie had a sharp and inquisitive mind and had many questions during her short, five-and-a-half-month battle with brain cancer. She was aware of the healthcare inequities facing pediatric cancer and wanted to make sure she contributed to all the advancement’s science has to offer. Mattie’s tumor was donated to medical research, with hopes that Mattie’s Journey will continue in the lab and she will play a part in future medical breakthroughs. Her family made a commitment to her to continue to raise awareness and funds for DIPG research. Thank you for being a part of #mattiesjourney where we continue to be guided by the belief that #sciencewillwin and #defeatDIPG.

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.