We will spend the rest of our lives raising awareness and money for DMG cancer research so that no parent ever has to be told that their child has been sentenced to death.

There is a mass in your son’s brain. Cancer. Aggressive. It was a call that every parent dreads but at the same time thinks they will never get. A precautionary MRI had been performed earlier that morning when the radiologist called our house on that cold, gray, Sunday afternoon to deliver the devastating news. We heard everything they said and nothing at the same time. We were frozen with fear and felt like we were going to throw up. That 3 minute phone call altered the trajectory of our lives.

In January 2024 our perfectly healthy, 10 year old son, Mark, was diagnosed with terminal brain cancer called Diffuse Midline Glioma also known as “DMG.” Mark died two weeks shy of his 11th birthday after battling courageously for 10 months. He inspired an entire community, Mark’s Army, with his bravery and courage in the face of this impossible battle. 

We were told from the onset that DMG is a death sentence. It is inoperable, rare and has a 100% mortality rate.  The worst of the worst. The average survival time from diagnosis is 9 to 12 months. The only standard of care is radiation and then hope that your child is healthy enough to get into one of the few clinical trials being offered in the United States.  Mark never got that chance.

In 2021, brain cancer surpassed leukemia as the most deadly childhood cancer, with DMG being the most lethal form of brain cancer. Childhood cancer research receives only 4% of federal funding directed to cancer research despite being the leading cause of death by disease for children. Pediatric cancer is devastating, it is heartbreaking and up until Mark’s diagnosis it was someone else’s battle. We had the luxury of standing idly by.

The federal government is not allocating the resources necessary to fight pediatric brain cancer and much of the funding for DMG research comes from private organizations.  In order for there to be change, we all need to be a voice for those that are too small or too sick to fight for themselves.