Rhya Jae’s Journey: A Brave Little Fighter with a Big Smile

When Holli talks about her daughter Rhya Jae, she paints a picture of a joyful little girl who loves cheering for her Kansas City Chiefs, coloring with her sisters, and swimming on warm summer days. But behind Rhya Jae’s bright smile is a journey no child—or parent—should have to face.

Rhya Jae was born on June 10, 2020. At just four months old, Holli noticed lumps in her baby’s neck. Over and over, she brought Rhya Jae to the doctor, certain something wasn’t right. Nineteen visits later, after being told repeatedly that the lumps were “just swollen lymph nodes,” Holli insisted on a blood test. That test, taken in October 2024, changed everything: it showed signs of Neurfibromatosis Type 1, a genetic condition that can cause tumors in the nervous system, including the brain and spinal cord.

Further scans revealed multiple tumors in Rhya Jae’s tiny body, including one near her left lung. During a biopsy later that December, Rhya Jae stopped breathing under sedation—doctors discovered she was at very high risk for complications during anesthesia. It was a terrifying moment, and one that made every procedure from then on even more complex.

In April 2025, a full-body MRI revealed nine tumors, including a brain tumor. An eye exam showed her vision is severely impaired—20/200, considered legally blind. “My heart went into a million pieces,” Holli shared. “No parent should ever have to hear that news about their child.”

Today, doctors are closely monitoring Rhya Jae’s brain tumor, repeating scans to determine if it is growing and when treatment might be needed. The waiting, Holli says, is one of the hardest parts. “We go to bed at night wondering what the next day will be like for Rhya Jae. Is she going to enjoy the nice weather outside? Will she get to play like a normal child? Or will she be in pain today?”

Through it all, Rhya Jae has continued to shine. She loves reading books with her mom, spending time outdoors with her sisters, entertaining her little brother, and celebrating her favorite football team. She is described by her mom as beautiful, amazing, and strong—a child whose spirit rises above her diagnosis.

For Holli, a mom raising four children, the emotional toll is immense. She had worked for many years as a program manager, but when Rhya Jae’s symptoms became more painful and difficult to manage, she had to stop working. Still, she’s determined to show her kids what resilience looks like. “It’s so hard being away from Rhya Jae and she can’t be away from me,” she admitted. “But I want my kids to see that even in the hardest times, we keep going.”

The Pediatric Brain Tumor Foundation has been one of the supports along their journey, providing connection and reminding Holli that she is not alone. “Just knowing someone is there to talk to when needed is the best feeling,” she said.

Rhya Jae’s journey is one of bravery, love, and determination. She faces challenges most adults couldn’t imagine, yet her life is still filled with laughter, games, and family. Her story is a reminder of why we fight for a world without childhood brain tumors—a world where children like Rhya Jae can simply enjoy being kids.