Martha von Dietman was born in the summer of 2017. The fourth child in her family, she was the fastest to walk and couldn’t wait to keep up with her siblings. In hindsight, it’s almost as if she knew her time was limited and she tried to get the most out of it.
Martha could spend the whole day at the beach eating and playing with sand, building castles, and searching for shells. She was constantly exploring her environment and loved animals, especially owls. But she could also quietly look at books or serve coffee and cake out of her toy kitchen.
A few months before her second birthday, Martha developed a cold that wouldn’t go away and started walking unsteadily. Her parents took her to the emergency room and a neurologist admitted her to the hospital when her symptoms worsened a week later. An MRI showed a diffuse mass in Martha’s brain stem, which doctors initially misdiagnosed as DIPG, an incurable tumor with an average 9- to 15-month survival.
The diagnosis changed the von Dietmans’ world. Martha’s health declined rapidly after learning of the tumor, but a shunt, high doses of steroids, and radiation saved her life. A biopsy and debulking surgery offered a glimmer of hope when it revealed her tumor was an embryonal tumor with multilayered rosettes (ETMR). Although this tumor type is also highly aggressive with low survival rates, Martha recovered quickly from surgery and started chemotherapy just days later with some initial success.
Children with brain cancer can’t wait another week, another day, another minute for your support. When you donate to the Pediatric Brain Tumor Foundation, you help fund life-changing research and provide families with the resources and support they need. Don’t let pediatric brain cancer steal another future.
In total, Martha underwent 7 surgeries including open brain surgery and 46 sessions of radiation. She was sedated over 60 times, received countless blood transfusions, and a dozen lumbar punctures or intraventricular injections.
And yet, Martha never gave up. After radiation, she learned how to walk again. When she lost that capability after surgery, she learned to crawl and stand up again. Martha fought very hard, but the tumor was too aggressive. The tumor relapsed and she had to stop chemo. New trials showed no success.
Re-irradiation gave Martha a couple more weeks, and she was able to have one last trip to the beach with her family. Three months before her third birthday, she passed away peacefully at home in her mother’s arms surrounded by family.
The von Dietmans continue to honor Martha’s memory by raising awareness and supporting other families facing a child’s brain cancer diagnosis. They recently became parent mentors in the Pediatric Brain Tumor Foundation’s peer-to-peer program and partnered with the NASCAR Hall of Fame and the city of Charlotte, NC during last year’s Childhood Cancer Awareness Month to help advocate for families in their local community.
They do this because they understand firsthand that with each passing day, more children are diagnosed with the deadliest childhood disease. More families are mourning the loss of futures that will never be fulfilled.
Children with brain tumors can’t wait another year, another month, another day for your support. Donate today and give kids with brain cancer the futures they deserve.
Alyssa was a bright and energetic child, excited to start sixth grade. She had just switched schools, and the upcoming year held the promise of new friendships and opportunities. But soon, Alyssa's journey took an unexpected and heart-wrenching turn.
On March 7, 2023, 2-year-old Trey was rushed to the ER with excessive vomiting and extreme fatigue. “That’s what drove us to the emergency room that night,” explains Trey’s mother, Ebony. “But we had no idea the magnitude of the diagnosis [we would receive].”
On January 25 of this year, two-year-old Ian’s mom, Yaimary, noticed her son walking with his head consistently tilted at an odd angle. Concerned, she scheduled an appointment with his pediatrician that same day. After a thorough examination, the pediatrician sent Ian and his mom directly to the emergency room where a CT scan revealed a mass at the back of the child’s head.
“This report lays groundwork to improve the experience of people living with this disease,” said Dr. Sanjay Gupta, CNN’s chief medical correspondent, one of the country’s leading neurosurgeons, and a member of PBTF’s Board of Directors. “I believe it shines a much-needed spotlight on the wide-ranging and extensive challenges that this type of tumor causes for patients and their families, and I am hopeful that this moment is a significant milestone for this community.”
The Pediatric Brain Tumor Foundation today announced the appointment of Ursula Burns and Jordan Wertlieb as inaugural members of the organization’s new Advisory Board. Burns and Wertlieb offer their exceptional business acumen and experience to PBTF, the largest patient advocacy funder of pediatric brain tumor research.
