When Naomi was born, her journey had already begun. Diagnosed with an immature teratoma—a rare congenital brain tumor—Naomi’s life would be shaped from the start by the effects of her condition. As her mother, Sandra, explains: “Naomi had a brain tumor before I even knew I was pregnant with her.”

At 16 years old, Naomi continues to live with the complex and lasting impact of her diagnosis. Partial paralysis, cortical visual impairment, and intellectual disabilities are just some of the challenges she faces each day. While many equate survivorship with recovery, Sandra emphasizes what many brain tumor families know all too well: surviving is only the beginning.

Every day life is layered with complexities: crawling remains her only means of independent movement. Hip surgeries and difficult recoveries have taken a toll, and developmental delays leave her functioning at the level of a preschooler. Still, Naomi whispers “walk” daily—and Sandra holds on to that word with hope.

“Naomi is perseverant and tenacious. She doesn’t smile or laugh often, so when it happens, it’s truly a beautiful thing. Hearing her laugh out loud with her sister—it’s one of the few things that keeps me going.”

Sandra points to systemic gaps in care—especially for those with more complex medical and developmental needs. “There’s a critical shortage of direct support professionals. These people are lifelines—for families like mine, and for the dignity and independence of people like Naomi.” While services like Medicaid and local developmental disability boards exist, navigating them requires relentless advocacy, and too often the support they provide falls short. “We need funding, training, and awareness—not just for treatment, but for lifelong care.”

A Mother’s Perspective on Hope, Independence, and What Comes Next

Independence looks different for Naomi than it might for most teenagers. Sandra dreams of being able to make a simple peanut butter and jelly sandwich on her own. At the same time, Sandra’s preparing for the long-term realities of caregiving and planning for the future—one that also considers Naomi’s sister, Nora, who will be starting college soon and is already deeply connected to Naomi’s journey. “I expect the remainder of my time on this planet will be filled with all it takes to care for Naomi for the rest of her life. Hopefully, we’ll have some adventures and fun along the way. I’ve even started a bucket list.”

Sandra wants other families in the brain tumor community to know they’re not alone. “It’s tough. It can be excruciating. It can wreck your marriage. It can destroy your finances. Ask for help. Remember the siblings. Give yourself grace.”

And to everyone else: “Survivorship does not mean cured. A childhood brain tumor is always there—even when it isn’t. The effects don’t end with treatment.”

Sandra’s call to action is simple: do something.

“Offer help. Don’t ask what someone needs—just do it. Advocate at the local, state, or federal level. Fund therapies, camps, or caregiver nights out. Be part of this.”

At CBTF, we are honored to share Naomi’s story—and deeply grateful to families like the Blacks, who help shed light on the complete picture of survivorship: the hardship, the hope, and the humanity. Their courage reminds us why our work matters and how vital it is to stand beside families through every stage of the journey.

We invite you to help CBTF continue empowering families with the resources, community, and hope they need—every step of the way.