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.
About three weeks into the school year, Alyssa began experiencing nausea and persistent back pain. At first, doctors thought her discomfort was related to the stress of starting at a new school or the result of carrying a backpack filled with heavy schoolbooks. But then the pain grew more frequent and severe. Despite multiple appointments and tests with her doctors, they found nothing wrong. There were no signs of fever or headaches—only a growing unease with her worsening condition.
As the weeks went by, Alyssa’s symptoms escalated. She began holding her left arm in a peculiar way, unable to explain why. This alarming development coincided with her mid-semester break, and her parents decided it was time to seek further medical advice. That day, a pediatrician observed Alyssa’s unsteady walk and immediately recommended her parents take her to Children’s Healthcare of Atlanta for further examination.
It was there that the gravity of Alyssa’s situation quickly became apparent. In less than ten minutes after an initial MRI scan, doctors delivered devastating news—Alyssa had an inoperable brain tumor. The urgency of the situation meant immediate surgical intervention to place a shunt that would help reduce pain, but the tumor itself could not be removed.
The diagnosis was an astrocytoma brain tumor, coupled with neurofibromatosis, a condition that causes tumors to form on nerve tissue. Alyssa’s family was thrust into a relentless cycle of hospital visits, chemotherapy, and radiation therapy. Initial treatments showed little promise, prompting trips to St. Jude’s for proton radiation, which temporarily helped. However, complications such as necrosis required further chemotherapy and a feeding tube, as Alyssa struggled to maintain her weight and strength.
Throughout this ordeal, Alyssa’s spirit remained unbroken. Despite the excruciating treatments and countless hospital stays, she never lost her faith or her radiant smile. Seven years after her passing in 2017, Alyssa’s resilience and unwavering belief in the goodness of life continues to inspire her family, friends, and church community.
Every April in memory of Alyssa’s birthday, her parents and brothers collect gift cards for the Pediatric Brain Tumor Foundation to support other families facing a child’s brain tumor diagnosis. This year would have been Alissa’s 20th birthday. Her family marked the occasion by collecting $2200 in gift cards.
“There’s always a need for gift cards for families. I hardly ever left the hospital when Alyssa was being treated for her brain tumor – I didn’t want her to be there by herself. Using gift cards to have food delivered was much more convenient than having to leave the hospital. I could run downstairs to the lobby and be back in less than 10 minutes – time I needed to spend with my daughter,” recalls her mom Melissa. “I know that if Alyssa were here, collecting gift cards for other families is something she would have done on her own.”
Alyssa’s short life was filled with moments of joy, faith, and a desire to help others, even in the face of tremendous adversity. Her legacy lives on through the lives she touched and her family’s annual gift card collection that supports others in need – a poignant reminder that even in the darkest times, there is always hope and a community willing to lend a helping hand.
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.
It’s been a year and a half since Graham, who is four, was diagnosed with a pilocytic astrocytoma, a low-grade, slow-growing brain tumor. “On Christmas morning Graham was super lethargic. He didn’t want to wake up, which we assumed was due to the long day of travel the day before. But then he had no interest in opening presents. All he wanted to do was nap,” his mother, Abbie, recalls.
“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.
