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Mary Stegmeuller

  • Diffuse Intrinsic Pontine Glioma (DIPG)

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Diffuse Intrinsic Pontine Glioma (DIPG)

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Mary is an outgoing 5-year-old who loves her brother, cats, princesses, books and crafts.

Mary was 4 years old when she was diagnosed with a rare, deadly brain tumor called diffuse intrinsic pontine glioma (DIPG) in October 2020. For Mary’s family this diagnosis came with many things — fear, a poor prognosis and a loss of hope. Her mother did not know if Mary would be alive to celebrate Christmas that year. 

Mary endured 30 rounds of radiation over six weeks, which included being sedated each day. The second Mary got home from treatment she’d say, “Let’s go to school.”

By the end of 2020, Mary had endured a biopsy, 37 doctor visits, two emergency room visits, 11 COVID tests, one surgery, 37 rounds of anesthesia, 30 radiation treatments, two MRIs, 12 IVs, 11 speech and OT sessions and one first walk after brain surgery. 

Through all of this, Mary kept insisting to attend school as much as possible and started new dance classes. 

Mary’s doctors told the family about a clinical trial at Lucile Packard Children's Hospital Stanford. The trial, funded in part by ALSF, uses CAR-T immunotherapy to target the tumor. Mary enrolled and her family began making monthly visits to Stanford, a thousand miles away from their home in Colorado. In March 2021, Mary was there for 35 days, with 26 of those in-patient in the hospital. Following that treatment, there was a 10% reduction in the size of the tumor. Mary is now back at Stanford again to continue treatment. 

ALSF also helps Mary’s family through the Travel For Care program. 

Throughout treatment, Mary continues to be determined. She uses her therapy walker to walk herself out the hospital and through the airport, loves spending special time with her brother and just being a regular, but extraordinary 5-year-old. 

“#MaryStrong doesn’t even begin to describe it,” said Kristin,  Mary’s mom.  

Information provided by Kristin Stegmeuller, Mary's mom
Updated November 2021

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