The world has suffered a heartbreaking loss as twelve more beautiful children—Mariah, Kirstyn, Martina, Annabelle, Shannon, Santi, Richard, Allie, Nigel, Lucy, Kaylee, and Joey—have had their young lives cut short by Diffuse Intrinsic Pontine Glioma (DIPG). This rare and aggressive brain tumor, which primarily affects children, is one of the most devastating diagnoses a family can receive. DIPG infiltrates the pons, a critical area of the brainstem responsible for essential bodily functions, including breathing, heartbeat regulation, and motor skills. As the tumor progresses, it robs children of their ability to walk, talk, swallow, and even breathe, all while leaving their cognitive abilities intact—forcing them to be fully aware of their own decline. Despite decades of research, there remains no cure, leaving families helpless as they witness their children endure unimaginable suffering.

The Stories Behind the Names: Remembering the Children

Each of these twelve children was more than a name, more than a statistic in a grim reality of pediatric brain cancer. They were vibrant souls, filled with laughter, love, and endless potential.

Mariah was an aspiring dancer, twirling her way through life with boundless energy and grace. Kirstyn, a book lover, would get lost in the pages of her favorite stories, dreaming of adventures she would one day take. Martina had a heart for animals, always tending to strays and dreaming of becoming a veterinarian. Annabelle loved painting, filling her home with colorful creations that reflected her bright spirit. Shannon, an athlete, spent her days chasing soccer balls and scoring goals, inspiring everyone with her determination. Santi had an infectious smile that could light up any room, a joy to all who knew him. Richard, the class clown, kept his friends laughing even on the hardest days. Allie loved music, playing the piano with a passion that was beyond her years. Nigel dreamed of space, his room covered in glow-in-the-dark stars and planets, always reaching for the cosmos. Lucy was a poet, her words weaving together beautiful stories of love and hope. Kaylee wanted to be a teacher, spending hours playing pretend school with her younger siblings. Joey, the youngest of the group, was a bundle of energy, bringing happiness wherever he went.

The loss of these children is not just a personal tragedy for their families; it is a loss for the world, which will never get to see their potential realized. They were daughters, sons, siblings, and friends—each one leaving behind a void that can never be filled.

Understanding DIPG: The Unforgiving Disease

DIPG is one of the most aggressive pediatric cancers, and it remains one of the deadliest. Unlike other types of brain tumors that can be surgically removed, DIPG is embedded in the brainstem, making surgical intervention impossible. The disease progresses rapidly, often taking children within months of diagnosis. Despite advances in medicine, survival rates remain devastatingly low. Less than 10% of children diagnosed with DIPG survive beyond two years.

The symptoms of DIPG are both terrifying and heartbreaking. Initially, children may experience minor difficulties, such as trouble walking, slurred speech, or slight vision problems. However, as the tumor grows, it places pressure on the brainstem, leading to complete loss of motor functions. Within weeks or months, once-active children become completely dependent, unable to move or speak, yet painfully aware of their decline.

Currently, there is no known cure for DIPG. Treatment options are limited to radiation therapy, which temporarily slows tumor progression but does not provide a long-term solution. Families of affected children often turn to clinical trials, hoping to find a breakthrough that could give their child a fighting chance. However, despite ongoing research, progress remains slow due to the tumor’s location, complexity, and resistance to standard treatments.

A Call for Action: The Need for Awareness and Research Funding

The loss of Mariah, Kirstyn, Martina, Annabelle, Shannon, Santi, Richard, Allie, Nigel, Lucy, Kaylee, and Joey is a stark reminder that DIPG is a disease that continues to take young lives with no viable cure. This is not just a medical crisis—it is a moral crisis. As a society, we cannot stand idly by while thousands of children continue to suffer and die from a disease we still know so little about.

Despite being one of the most aggressive childhood cancers, DIPG receives very little funding for research. Most families affected by the disease must raise money independently to contribute to scientific studies in hopes of finding a cure. Unlike other forms of pediatric cancer that have seen significant improvements in treatment and survival rates, DIPG remains largely untreatable, leaving families with nothing but heartbreaking goodbyes.

The stories of these twelve children should serve as a catalyst for change. More funding needs to be allocated to DIPG research, more awareness must be raised, and more efforts should be made to support affected families. It is unacceptable that in a world with so many medical advancements, there is still no hope for children diagnosed with DIPG.

Honoring Their Memory: Keeping Their Light Alive

While their physical presence may no longer be with us, the love and joy that Mariah, Kirstyn, Martina, Annabelle, Shannon, Santi, Richard, Allie, Nigel, Lucy, Kaylee, and Joey brought into the world will never fade. Their families and communities will continue to speak their names, share their stories, and fight in their honor.

As the poet Omai once said, “People you love never die. Not completely. They live in your mind, the way they always lived inside you. You keep their light alive.” These children may no longer be with us, but their light continues to shine in the hearts of those who loved them. They guide us, like the glow of long-extinguished stars, reminding us of the beauty they brought into the world and the work that still needs to be done.

The Fight Must Continue

The fight against DIPG is far from over. Every year, hundreds of children receive this diagnosis, and their families are forced to endure the agony of watching their child slip away, knowing there is nothing they can do to stop it.

We must honor the memory of Mariah, Kirstyn, Martina, Annabelle, Shannon, Santi, Richard, Allie, Nigel, Lucy, Kaylee, and Joey by demanding more funding, spreading awareness, and supporting research. We must refuse to let their deaths be in vain. We must act—not just for them, but for the children who are still fighting and for those who will one day receive this devastating diagnosis.

Don’t help just because it’s your child; help because it’s a child. These children mattered. Their lives were precious, and their legacy must be one of change. By working together, we can ensure a future where no child has to suffer from DIPG, where parents never have to say goodbye too soon, and where children get the chance to grow up and fulfill the dreams they once held so dear.

Let their light inspire us to take action. Say their names. Share their stories. And never stop fighting for a cure.