What is DIPG?
Diffuse Intrinsic Pontine Glioma (DIPG) is an aggressive brain tumor that develops in the pons, an area of the brainstem that controls many essential functions, including movement, balance, breathing, swallowing, and facial movement.
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Unlike many tumors that grow as one clearly defined mass, DIPG grows diffusely—meaning tumor cells spread between and around healthy brain cells. Its location and infiltrative growth make surgical removal impossible.
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DIPG primarily affects children. Despite decades of research, there is currently no cure.
Behind every statistic is a child.
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And every child deserves more,
Where Does DIPG Grow?
DIPG develops in the pons, a small but critically important part of the brainstem located near the base of the brain.
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The brainstem connects the brain to the spinal cord and helps regulate essential functions such as breathing, swallowing, eye movements, facial expressions, and communication between the brain and body.
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Because DIPG grows within this delicate area, tumor cells become intertwined with healthy brain tissue. Attempting to surgically remove the tumor would risk damaging structures responsible for keeping the body functioning.
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It isn't simply the size of a DIPG tumor that makes it so dangerous. It's where it grows and how it spreads.
Why Is DIPG Hard To Treat?
Radiation can provide temporary relief, but is not a cure.
Children with DIPG deserve better treatments.
They deserve a cure.
Balance & Movement
Because DIPG affects the brainstem, children may experience:
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Difficulty walking or frequent stumbling
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Loss of balance or coordination
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Weakness in the arms or legs
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Changes in posture or movement
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Difficulty with fine motor skills
These changes may begin subtly and become more noticeable as the tumor progresses.
What Are The Symptoms of DIPG?
Symptoms of DIPG can develop gradually or appear suddenly. Because the brainstem controls so many essential functions, symptoms vary depending on which areas are affected.
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Early warning signs can be subtle and may initially be mistaken for less serious childhood conditions. As the tumor progresses, symptoms often become more noticeable.
Eyes & Facial Changes
Because DIPG affects the nerves responsible for eye and facial movements, children may experience:
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Double or blurred vision
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Eyes that appear crossed or misaligned
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Difficulty closing one or both eyes completely
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Facial drooping or weakness
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Changes in facial expressions
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Abnormal eye movements
These symptoms can sometimes be mistaken for common eye problems or other less serious conditions.
IMPORTANT: Recognizing the Warning Signs
DIPG symptoms can begin subtly, and many resemble common childhood illnesses. While these symptoms do not necessarily mean a child has a brain tumor, persistent, worsening, or unexplained neurological changes should never be ignored.
Trust your instincts. If something doesn't seem right, seek medical evaluation and continue asking questions.
Other Neurological Changes
Because DIPG affects essential brainstem functions, children may also experience:
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Persistent or worsening headaches
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Nausea or vomiting, especially in the morning
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Difficulty swallowing
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Slurred speech or changes in speech
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Unusual fatigue or increased sleepiness
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Changes in behavior or mood
Symptoms vary from child to child. Not every child will experience the same warning signs.
Diagnosing DIPG often begins when a child develops unexplained neurological symptoms. Because early warning signs can resemble more common childhood conditions, reaching a diagnosis may not happen immediately.
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When doctors suspect a problem involving the brain or brainstem, specialized imaging and neurological evaluations help determine what is happening.
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Magnetic Resonance Imaging (MRI) is the primary tool used to identify DIPG. In some cases, a biopsy and molecular testing may provide additional information about the tumor.
How Is DIPG Diagnosed?
How Is DIPG Treated?
Unlike many other childhood cancers, DIPG has no established cure. Treatment focuses on temporarily slowing tumor progression, managing symptoms, and preserving quality of life.
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Radiation therapy remains the primary established treatment, but families may also explore clinical trials, investigational therapies, off-label medications, molecularly targeted approaches, and complementary treatments.
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Some approaches are supported by clinical evidence, while others remain experimental or unproven. Understanding these differences is essential when navigating treatment decisions.
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Every child deserves access to accurate information, compassionate care, and continued research toward more effective treatments.
The Reality of DIPG Treatment
For families facing DIPG, treatment is rarely a straightforward path. There is no established cure, and the options available often focus on slowing progression, managing symptoms, and preserving quality of life.
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Radiation may temporarily shrink the tumor or improve symptoms, but DIPG almost always progresses. Clinical trials offer opportunities to explore new therapies, yet many treatments remain in the earliest stages of research.
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Some families also explore off-label medications, supplements, and therapies intended to target specific genetic mutations or molecular pathways. While these approaches may have scientific reasoning behind them, many have not been proven safe or effective against DIPG in children.
Families are often forced to make incredibly difficult decisions with limited time, incomplete information, and no guarantee that any treatment will work.
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The reality is that children with DIPG do not simply need more treatment options.
They need treatments that work.
They deserve a cure.
DIPG: The Devastating Statistics
Why DIPG Research Matters
DIPG is one of the most devastating forms of childhood cancer, yet effective treatment options remain extremely limited.
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For decades, radiation has remained the primary established treatment. While researchers have made important discoveries about DIPG's biology, translating those discoveries into treatments that significantly improve survival has been incredibly difficult.
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One of the greatest challenges is the tumor's location within the brainstem, along with its ability to infiltrate healthy brain tissue. The blood-brain barrier also makes delivering certain medications to the tumor more difficult.
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Researchers have identified genetic alterations, including H3 K27 changes, that help explain how these tumors develop and grow. Understanding these mutations and the molecular pathways involved is essential to developing more targeted treatments.
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But scientific discoveries require funding, clinical trials, collaboration, and continued investment before they can become meaningful treatment advances.
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Children with DIPG cannot afford to wait for research to become a priority.
Every discovery matters. Every clinical trial matters. Every child matters.
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                            Her Fight Is Now OUR Fight.
The Little Girl Behind Our Fight
Behind every DIPG diagnosis is a child. A child with a name, a personality, a family, and dreams for a future they deserve to have.
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For us, that child was Kinlee Karter Owens.
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Before DIPG entered our lives, she was simply our Stink. A funny, sassy, loving little girl who adored her family, her friends, and everything pink.
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Kinlee was diagnosed with DIPG on December 18, 2024, at just nine years old. For nearly 15 months, she faced a disease that medicine still cannot cure.
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On March 10, 2026, DIPG took our little girl from our arms.
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But it did not take her story. It did not take her impact. And it will never take away our determination to fight for the children who come after her.
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The Stinky Karter Foundation exists because children deserve more than hope.
They deserve a cure.
Her fight is now OUR fight.