Mylah’s Story: Facing a Rare Diagnosis with Courage, Community, and Support

“My beautiful, mighty Mylah is my calm baby girl. But one day in January, when she was just two months old, she woke up crying and wouldn’t stop,” recalls her mom, KateLynn. “Over the next several days, I took her to numerous doctors, urgent care, and the emergency room. I was told she had a double ear infection, and I should keep giving her Tylenol. I fought and fought for someone to listen as she was throwing up so violently she turned blue.”

Days passed without relief. Finally, Mylah received an ultrasound that revealed a large tumor in her cerebellum. She was immediately admitted to the hospital, and just two days later—one day before her three-month birthday—Mylah underwent surgery to remove the tumor. Unfortunately, this would be just the beginning of Mylah’s journey. She faced a series of severe complications, including a rare stroke called a dural venous sinus thrombosis, high blood pressure, left vocal cord paralysis, chronic respiratory failure, hearing loss, and the loss of her ability to nurse or receive nutrients orally.

A biopsy revealed that Mylah had a rare, aggressive grade 4 embryonal tumor, requiring three rounds of intensive chemotherapy combined with three rounds of stem cell therapy. Due to her young age and the demanding treatment, Mylah had to remain in the hospital for four months, separated from her three siblings who weren’t able to spend time bonding with their new baby sister.

As a single parent, KateLynn was overwhelmed by the emotional and financial burden of caring for her critically ill infant while also tending to her other young children at home. “It’s been so nerve-racking with all the unknowns,” says KateLynn. “The financial hardship has been overwhelming—trying to pay rent, cover bills, afford gas for daily trips to the hospital, and also pay for a sitter to watch my other children.”

Despite the challenges, KateLynn has found strength in the connections she’s made with other families at the hospital and through the support she’s received from the Pediatric Brain Tumor Foundation.

“I was terrified to open up to other families at the hospital, but once I did, I wished I’d done it sooner,” KateLynn admits. “It’s an entire community going through the same experience, and they understand more than anyone else what you’re going through. As a result, they know better the right things to say. I never thought I would consider the hospital community family, but they’ve become just that. While other people move on with their lives, these families are here for us.” She adds, “And, my baby girl knows and loves all the nurses, techs, and nurse practitioners so much.”

KateLynn was additionally introduced to the Pediatric Brain Tumor Foundation through her family’s social worker at Primary Children’s Hospital in Salt Lake City. PBTF provided her family critical assistance through its Butterfly Fund, an emergency financial aid program for qualifying families facing financial hardship due to a child’s pediatric brain or spinal cord tumor diagnosis.

“Childhood brain tumor treatments are often long and intense, forcing many parents to take unpaid leave to care for their child, which adds significant emotional and financial stress to the family,” explains Jenn Kelley, Pediatric Brain Tumor Foundation Family Support Manager. “We were honored to be able to support Mylah and her family through PBTF’s Butterfly Fund, which has helped to ease some of her family’s financial burden during her challenging treatment journey.”

If you or a family you know has received a pediatric brain tumor diagnosis and is experiencing emotional or financial hardship, the Pediatric Brain Tumor Foundation is here to help. Visit PBTF’s Support for Families page to access a wealth of information and assistance for every stage of a family’s journey—from diagnosis through treatment and beyond. You can also reach out to our Patient Family Advocacy team by completing this brief form or emailing [email protected] anytime. For those interested in learning more about PBTF’s Butterfly Fund, information can be found here.