I know and love someone affected by Batten disease.
Actually, more than one person.
Some stories find us even though we’re never ready to hear them. They arrive with a jolt: a phone call, a diagnosis, a sudden shift in reality that divides life into before and after. For families living with Batten disease, the jolt quickly becomes more than a story It becomes a way of life.
Batten disease is a rare, inherited disorder that affects the brain and nervous system. Caused by genetic changes that prevent the body from clearing waste inside cells, it leads to a buildup that damages vision, movement, cognition, and overall health.
Symptoms vary widely, but many children begin life appearing perfectly healthy. Then, often without warning, families witness heartbreaking changes: sight loss, seizures, motor and cognitive decline, and other progressive neurological challenges. For many, the shock is as profound as the diagnosis.
But beyond the medical facts is something harder to name, yet instantly recognizable: the strength it takes to love through the unknown. To hold steady when the ground keeps shifting. To keep showing up in the face of uncertainty.
Despite the hardship, families around the world face Batten disease with extraordinary tenacity, compassion, and commitment. Whether a child is newly diagnosed or further along in the journey, no one walks this path alone. A global community is here to share stories, support, and solidarity.
In 2019, I had the rare privilege of sitting down with a number of Batten parents, each in one-on-one conversation. Some of their children were, or are, still living. Others had already passed. Each family carried a story full of tenderness and resourcefulness. They welcomed me into that sacred space, and I have carried their words with me ever since.
What they shared was more than information. It was truth, raw and radiant, about love, heartache, resilience, hope, strength, transformation, and connection. A window into lives shaped by grief, yes, but also by advocacy, community, and consciousness.
These parents didn’t seek out bravery. But when life demanded it, they summoned the courage and met the moment.
Many described the pivotal pain point—the moment everything changed—as a kind of inner rupture. And yet, within that rupture, something steady began to form. A deep clarity. A renewed devotion to their child’s well-being. A commitment to protect what matters, even when the way forward was unclear.
Batten families come from all walks of life. Some balance caregiving with professional responsibilities. Others pause careers to be fully present. What unites them is not what they do, but how they love—fiercely, tenderly, without pause.
And yes, there is relentless doing. Families spend years seeking trials, experts, and next steps. Over time, many shift toward honoring everyday moments: helping their child find comfort, making space for laughter, preserving joy.
That shift becomes its own form of wisdom: a reminder that living fully isn’t about fixing what can’t be fixed, but about loving with everything you’ve got.
In those tear-filled conversations, I heard how trauma doesn’t just begin with diagnosis. It returns and repeats. Families face daily losses in small, painful doses. Sometimes this magnifies existing strength. Other times it highlights tensions that had been quietly present all along.
The disease reshapes siblings, communities, and priorities. And yet, in the midst of that change, family members often find each other again. They connect with others who understand. And from that shared understanding, healing begins.
Amid the sorrow, there is also light. Stories filled with warmth. Moments of levity. A kind of grace that lives beside the pain and refuses to be swallowed by it.
Batten families are Courageous Beings. Every day, they make choices rooted in love and anchored in presence. They carry immense and sometimes invisible loads with visible grace. They find meaning in small miracles, and strength in connection.
Last week, on June 9, communities around the world marked International Batten Disease Awareness Day as part of June Batten Disease Awareness Month. But honoring Batten families is not reserved for one day or one month. Their courage continues, and so must our awareness.
To every parent, sibling, caregiver, and supporter walking this path: you are not alone. Your story matters. Your presence matters.
With love and deep respect, thank you for showing us what it means to live with heart wide open.
Research is ongoing and the hope is real. BDSRA is the largest support and research organization dedicated to Batten disease in North America, dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action.