When Courtney and Evan met their newborn daughter, Brenna, they instantly knew their journey as parents would look different from what they had imagined. Brenna was born with Harlequin ichthyosis, a rare and severe genetic skin disorder that causes thick, plate-like scales, redness, and an increased vulnerability to infection. From the very beginning, Brenna faced challenges that most children—and their families—never have to imagine.
For Courtney and Evan, the days following Brenna’s birth were filled with more than just the typical whirlwind of emotions. Alongside the joy of welcoming a new life came urgent medical decisions, fear, and an overwhelming sense of the unknown. Harlequin ichthyosis is not only rare—it’s often misunderstood, and for many parents, it can feel isolating.
As Brenna grew, her condition required daily, meticulous care. Bathing, moisturizing, and managing her skin safely became a full-time job. But over time, something powerful emerged: a vibrant, joyful child with a fierce spirit and a beautiful heart. Despite the pain, despite the stares from strangers, Brenna blossomed—and so did the family around her.
Her older brother, Connor, became one of her greatest protectors and champions. He doesn’t see Brenna for her condition; he simply sees his sister—the girl who makes him laugh, shares in his games, and fills their home with light. And their father, Evan, shows his unwavering love in the quietest yet most meaningful ways. Every morning, even though Brenna has little hair, he gently combs what she does have, showing a tenderness that speaks volumes about his devotion.
But the challenges haven’t only been medical. One of the most difficult aspects of raising Brenna has been navigating the world’s reaction to someone who looks visibly different. Courtney, her mother, recalls countless instances where people—especially other parents—chose silence over kindness. Instead of using their curiosity as a teaching moment for their children, many looked away, pulled their kids closer, or whispered.
“Why not just say, ‘I don’t know, but we’re all unique’?” Courtney asks. That simple phrase could teach understanding instead of fear. For a family already doing everything they can to keep their daughter healthy and emotionally supported, the social stigma often cuts the deepest.
Refusing to let misunderstanding define Brenna’s story, Courtney began writing about their journey. Through daily posts, blog entries, and eventually her book, A Different Beautiful (2016), she started to advocate—not just for her daughter, but for every child and adult who lives life a little differently. The book shares raw, honest reflections on parenting, disability, and the transformative power of love and empathy.
Today, Brenna is thriving. She is bold, confident, and full of life. Whether she’s playing with her brother, showing off her artwork, or smiling in family photos, Brenna reminds us all that strength doesn’t always look like what we expect. Her story, though shaped by a rare condition, is ultimately about what binds us all as humans: resilience, love, and the courage to be unapologetically ourselves.
As Courtney and Evan continue to raise awareness and spread a message of acceptance, they hope that more people will come to understand this simple truth: it’s not appearance that defines a person’s value—it’s compassion, character, and the way we treat one another.
Brenna’s life is not a tragedy. It is a celebration of courage, difference, and the power of a family’s unwavering love.
