• By Patience Makwele

What began as a mother’s quiet act of love and desperation has blossomed into a powerful national movement, one that is fundamentally reshaping Namibia’s approach to neurodevelopmental care and inclusive children’s literature. Anthea Kostin, author, founder of the Rory Kostin Foundation, and co-creator of Beyond Barriers Pediatric, shared her deeply personal journey, revealing how her daughter Rory’s critical illness became the unexpected catalyst for systemic change.

Before the life-altering diagnosis, Anthea described herself as someone in a calm season of life.  “I was in a quieter chapter of life, navigating the world post-COVID, focused on my family, and settling into what I thought was a more stable season,” she recalled. That changed when, at just three months old, her daughter Rory contracted bacterial meningitis. Though she survived, the infection left Rory with a severe brain injury.

“It shook me to my core, and everything shifted, her story changed my path, and it changed our family. I had to rebuild myself completely as a mother, a woman, and an advocate,” she said. But for Anthea, it wasn’t just a transformation “Rory’s story didn’t redefine me, it woke me up.”

In the aftermath, Anthea turned to writing affirmations and stories for Rory as a personal ritual to reconnect them both with joy and identity amid the trauma. It soon became clear how absent neurodiverse children were from mainstream literature. “I wanted stories that reflected children like mine, strong, different, neurodiverse, and full of light,” she said.

This realisation led to the birth of Read with Rory, a children’s book series designed to affirm, include, and empower. The debut title, The Mysterious Book of Magic:  Affirmations for Kids, has since been published globally and is available via Amazon, Google Books, and locally at Namibia’s Exclusive Books. It is the first in a planned five-part series, all centred on celebrating diverse abilities.

“I hope they feel powerful,” Anthea said to her young readers. “I hope they feel like they matter, like their voice, their uniqueness, and their magic belong in the world.” She added, “Representation isn’t a trend, it’s a necessity. Inclusive books tell every child: You exist. You are worthy. Your story matters.”

Initially, the book series was written as a way to fund Rory’s intensive therapy, but as Anthea shared the journey, she realised it was much bigger than one family. “As we shared it, I realised this was bigger than just our family, there were so many other families walking similar roads,” she explained.

It was then that the Rory Kostin Foundation was born as a non-profit organization that now provides therapy sponsorship, awareness campaigns, and financial aid for children with neurological conditions, particularly those who cannot access private care. It also supports community-based programmes, such as the Sunshine Centre in Walvis Bay.

Yet, Namibia’s health system posed a sobering reality. “We had to travel outside the country to access the kind of neurodevelopmental therapies that made a real difference,” she said. Recalling that experience, and pairing it with conversations with other parents, led to the question: “Why should we have to leave our country to give our children a chance?”

The answer came in the form of Beyond Barriers Pediatric, an initiative co-founded with Manuela van Schalkwyk, aiming to bring intensive, evidence-based therapy home. It caters to children with cerebral palsy, brain injuries, genetic syndromes, spina bifida, and prematurity conditions currently underserved in Namibia.

Anthea doesn’t mince words about the scope of the problem: “There isn’t a single trained neurodevelopmental therapist in Namibia.” She doesn’t call this a gap. “That’s not a market gap, that’s a crisis.” Her vision for structural change is urgent and ambitious: “First, we need trained neurodevelopmental therapists in the country,  full stop.” She advocates for government investment in pediatric neuro-rehab, early intervention subsidies, and streamlined registration pathways for international specialists. Importantly, she called on medical aid providers to “step up,” not only in covering therapy but also “essential assistive devices, from mobility aids, to supportive equipment.”

“Motherhood taught me that love makes you relentless,” she reflected. Beyond Barriers, she added, was born from “mothers who refused to accept that hope had to live across a border.” Despite the relentless demands, Anthea finds strength in quiet victories, Rory’s small milestones, messages from fellow parents, and historic breakthroughs like hosting Namibia’s first-ever neurodevelopmental therapy intensive. “Most days, I’m in the thick of it to be honest. Balancing therapy, advocacy, motherhood, and survival,” she stressed.

 “That’s when I pause, breathe, and remind myself: even if it doesn’t feel like it, we’re making a dent.”

For Anthea, confidence is no longer about appearances, it’s about persistence. “Confidence, to me, is staying in the fight, even when your hands are shaking,” she said. “It’s showing up without needing applause. It’s trusting that the work you’re doing matters, even if no one sees the cost. It’s saying, ‘this is hard,’ and doing it anyway. 

Confidence is bigger than your fear. It’s not about looking strong, but rather about choosing not to quit when everything in you wants to.” When Rory is old enough to read her mother’s story, Anthea hopes she understands the love that shaped it. “I want her to know I never gave up on her. I fought for her to have a life of joy, access, and dignity, a life where her potential wasn’t limited by diagnosis or geography,” she says. “I hope she understands that the pain she endured wasn’t in vain. That her life, even the hardest parts, helped open doors for so many others.