Jaxson’s Legacy
Jaxson Matteo was diagnosed with DIPG just three short weeks after his 7th birthday, on March 16, 2024. As with so many of your journeys, this came out of left field—he was a healthy boy who had just completed his third season of wrestling days before. Unfortunately, Jaxson won his battle on October 10, 2024. His journey was brief—six months and three weeks to be exact—but it was filled with courage and the true definition of a warrior.
Our community saw symbols of love, devotion, strength, hope, compassion, and inspiration. But in reality, we just feel lost. The hole that was left is immense and has deeply affected our family dynamic.
Jaxson was part of a different kind of family dynamic than most. He was raised by a single mother and had the best big siblings ever. Marcasa was 14 years older, and Diego was 12 years older. Jaxson was so proud of the fact that he was different from most and that he was a twin. His twin sister, Jianna, was a minute younger—and he never let her forget it.
A little bit about Jaxson, for those who didn’t know him: his number one attribute was his smile—it could brighten any day. His giggle was so infectious that you couldn’t help but join in. He had the ability to make everyone around him feel welcome and included. He loved superheroes, and we never anticipated that we would be raising ours. His dance moves were out of this world, and he flossed like no other. He was the definition of sweetness and gentleness, but his love surpassed it all. Most importantly, he loved Jesus—with a boldness that most adults struggle to find.
Upon his diagnosis, our journey became one of acceptance and faith. As a family, we decided that Jaxson needed to be the focus. We couldn’t do things for our own selfish needs but rather for what was in his best interest. We chose quality over quantity. We didn’t care if we only had one day—we were going to make that the best day ever. We decided early on that we wanted to remain home and surround Jaxson with the love of his extended family, friends, and community. He quickly became so ill that he was not a candidate for clinical trials, so we embraced the time we had. The only saving grace in his treatment was the extensive inpatient therapy he received during our stay at Children’s Hospital of Philadelphia.
Jaxson fought his fight with so much courage and determination. He refused to accept the hand he was dealt. His greatest struggle was paralysis, but he never asked why he was different or why his body wouldn’t work—he just put in the work to regain as much function as he could. And he did.
As I said before, Jaxson’s one-year anniversary of his arrival in heaven was Friday. This year has been the hardest. It began with relief—we were thankful for the time we had with him and for the memories that now keep us going. I’ve struggled with a loss of self, trying to find purpose as I felt my identity was stripped from me, even though I still have the blessing of three children who need me and are equally loved. But Jaxson, from birth, was the glue that held us together.
Where there is great grief, there was immense love.
Jaxson’s catchphrase was,
“DIPG doesn’t define me—but I, in fact, define DIPG.”
Jaxson would want us to cling to the lyrics from his battle song, Good Day by Forrest Frank:
♫ I’m ’bout to have a good day ♫
♬ No matter what they say ♬
♪ Sun is shining down on me ♪
♫ Birds are singing praise ♫
♬I’m ’bout to have a good day ♬
♪ In every single way ♪
♫ The God who made the universe ♫
♬Knows me by my name ♬
♪ So it’s a good day. ♪
