In June 2020, Brody Huber arrived home from a camping trip early, complaining of a headache and insisting he needed a night in his own bed.
The 13-year-old from Denver had grown six inches in the few short months since the Covid pandemic began, so at first the headache that wouldn’t quit seemed like a side effect of being a growing teenage boy.
But Brody, nicknamed ‘Golden Boy’ by his friends and family, lived for camping, biking and spending as much time as possible outside, so cutting his trip short was an immediate red flag.
Brody’s mother, Tina Porter, told the Daily Mail that since childhood, ‘he never once complained’ about being sick or in pain, even when he came down with severe illnesses like pneumonia and RSV.
But in the few months leading up to the June 2020 trip, typically active Brody had slowed down, pushing off plans to go biking with his older brother, Griffin, in favor of a nap.
‘He was just this bill of health,’ Porter said. ‘I just had this weird feeling.’
For peace of mind, Porter and her husband, Jeff Huber, asked doctors to perform an MRI of Brody’s brain, assuming the scan would come up clean.
However, images revealed a rare and aggressive brain tumor. Eight months later, Brody was dead at 14 years old.
Brody Huber, pictured here, was diagnosed in 2020 at age 13 with diffuse midline glioma (DMG), an extremely aggressive brain tumor most often diagnosed in children. Most patients die within a year, and 99 percent survive less than five years
A few days after that June MRI, Porter said doctors called her and asked: ‘Are you sitting down?’
They told Porter there was a ‘significant tumor’ nestled in Brody’s brain and urged the mom-of-two to immediately pack a bag and bring Brody to Children’s Hospital Colorado in neighboring Aurora.
The once-athletic teenager was so tired he slumped over as his mother and brother tried to help him out the door.
‘I was like, “Oh my god. This is really real,”‘ Porter said.
Jeff, who works as a physician’s assistant, saw on the scan ‘what a dad should never see in his kid’s head.’
The MRI had revealed ‘a pretty significant tumor’ that had wrapped around Brody’s thalamus, a structure in the middle of the brain that controls motor function such as walking and balance.
A biopsy of the tumor two days later revealed Brody had a diffuse midline glioma (formerly called a diffuse intrinsic pontine glioma), an extremely aggressive brain tumor most often diagnosed in children.
Fewer than 500 Americans are diagnosed with diffuse midline glioma (DMG) every year, and it makes up one in five of all pediatric brain tumors.
Patients generally only live for less than a year after diagnosis. According to the American Brain Tumor Association, 99 percent of patients diagnosed with DMG die within five years.
Brody was given six to nine months.
‘There is no stage. This is the worst of the worst,’ Porter said doctors told her.
Brody (pictured second from the left, between his mother Tina Porter and brother Griffin) had always been extremely active, but red flags were raised when he began struggling with headaches and fatigue
Brody, pictured here, had insisted on taking the stairs after his cancer treatments, his mother told the Daily Mail, until he physically could no longer walk
Like most DMGs, Brody’s tumor was inoperable because it was so delicately intertwined in the thalamus that operating could have left him with permanent brain damage.
Instead, he underwent six weeks of radiation, along with traditional Eastern therapies including meditation, acupuncture, massage and Reiki, a Japanese form of energy healing that involves placing one’s hands on or just above a person’s body and redirecting energy.
Porter said: ‘I was like, we’re going to do everything that we can, and he is going to be the poster child for this disease. You don’t know Brody.
‘You don’t know what we’re capable of. This is not how his story is supposed to end.’
A few months later, Brody was accepted into a clinical trial at the Vitanza Lab at Seattle Children’s Hospital.
Led by pediatric neuro-oncologist Dr Nick Vitanza, the trial involved surgically implanting a dome-shaped device called an Ommaya reservoir under a DMG patient’s scalp to allow doctors to inject medication directly into the cerebrospinal fluid.
Patients in the trial underwent chimeric antigen receptor (CAR) T-cell therapy, a type of immunotherapy that uses a patient’s own immune cells to fight cancer.
The family flew to Seattle in December 2020 so doctors could collect Brody’s red blood cells and begin modifying them before he could start the trial in March 2021.
Jeff Huber, Brody’s father, is pictured above hugging him. Brody died of DMG on March 8, 2021, at 14 years old
Brody (second from the right) was set to begin a clinical trial at Seattle Children’s Hospital but died eight days beforehand
But an MRI scan in February 2021 showed Brody’s brain ‘was like a sponge that had soaked up all of his cancer,’ Porter said. The disease had spread throughout his brain.
‘It was just getting worse and worse,’ she added. ‘And that was when doctors said there was nothing else they could do.’
Brody would not be able to join the clinical trial.
As they left the doctor’s office, Brody’s legs buckled underneath him. The kid who had insisted on taking the stairs early on in his treatment now needed a wheelchair to take him home.
‘I really thought I had it, Mom,’ Porter told the Daily Mail her son had said to her.
Brody died about a month later on March 8, 2021, eight months after his diagnosis.
His death came eight days before he was scheduled to start the clinical trial in Dr Vitanza’s lab. Porter later found out that a boy named Levi took his place, and the child lived nine months longer than expected after participating in the trial.
‘And there have been more kids with that same tumor that are still alive,’ Porter said. ‘Whatever they’re doing at the Vitanza Lab, they’re saving kids’ lives.’
Brody’s family set up the Brody Huber Foundation after his death to raise money for the Vitanza Lab at Seattle Children’s Hospital, which is conducting clinical trials for children with DMG
Earlier this year, Dr Vitanza’s team published the results of the phase I clinical trial, which found the CAR-T cell therapy was well-tolerated in 21 patients who were just six years old on average.
Children lived an average of 20 months after diagnosis, nearly twice as long as the average 11 months.
And three patients studied were still alive four years after diagnosis, a previously unthinkable feat.
Brody personally decided before his death to donate his entire brain and spine to science for research, and in the months after, his family started the Brody Huber Foundation, which has raised $85,000 to date to help fund the Vitanza Lab’s research.
On November 21, 2025, which would be Brody’s 19th birthday, the foundation is hosting its annual fundraiser with the goal of sending another $50,000 to the Vitanza Lab to take steps toward finding a cure for DMG.
Porter told the Daily Mail: ‘Brody didn’t want others to suffer.’
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