From aspiration to advocacy: A mother’s journey with CLN2 disease

I don’t recall the exact moment I sensed something was different about my son, Juju, but a mother’s intuition often whispers truths before they become evident.

Before doctors ever uttered the words “CLN2 disease” (also known as late-infantile Batten disease), I was concerned. Juju, now 8, was a vibrant child — running, laughing, and playing with the boundless energy that defines early childhood. However, subtle changes began to surface. He started experiencing seizures, his coordination became unsteady, and words that once flowed effortlessly began to falter. These early signs are characteristic of CLN2 disease, a rare and fatal neurodegenerative disorder that typically manifests between the ages of 2 and 4.

The diagnosis was a heavy blow. CLN2 disease is an inherited disorder affecting the nervous system, leading to symptoms such as seizures, ataxia (difficulty coordinating movements), myoclonus (muscle twitches), and vision loss. Over time, children with CLN2 experience a decline in motor skills, speech, and cognitive abilities. The progression varies, but the disease is relentless, often leading to a shortened lifespan.

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Becoming an advocate for the CLN2 disease community

In my younger years, I aspired to become a lawyer, envisioning myself in courtrooms, championing justice. Life, however, had different plans. Instead of legal battles, I found myself in hospital rooms, therapy sessions, and research conferences. My role transformed into that of an advocate — not in the legal sense I had imagined, but as a relentless protector and voice for Juju.

Every morning, I rise with a renewed determination to confront the challenges that CLN2 presents. I established the Juju and Friends CLN2 Warrior Foundation, aiming to support families navigating this arduous journey and ensure no one faces this battle in isolation. Through the foundation, we provide resources, emotional support, and a community for those affected by CLN2.

My advocacy extends beyond our foundation. I serve on advisory councils, collaborating with hospitals, legislators, and researchers to keep the needs of children like Juju at the forefront. Recognizing the importance of informed advocacy, I pursued a bachelor’s degree in criminal justice and am now preparing for law school. This path allows me to merge my passion for justice with the pressing need for systemic change in healthcare policies affecting rare diseases.

This journey is far from the life I had envisioned, but being Juju’s mother is a role I cherish beyond measure. Despite the relentless progression of CLN2, we celebrate every moment of joy, every shared laugh, and every small victory. The disease may attempt to rob us of many things, but it cannot diminish our love, hope, or the happiness we cultivate daily.

Through Juju’s eyes, the world is a tapestry of experiences — each moment rich with meaning. He teaches me to find beauty in simplicity and to appreciate the present. His resilience inspires a vision of a world where no child is overlooked, where every family receives unwavering support, and where dreams, though they may evolve, are still attainable.

In advocating for Juju, I advocate for all children affected by CLN2. I envision a future where research advancements lead to effective treatments, where early diagnosis paves the way for timely interventions, and where families are equipped with the resources they need to navigate this challenging path. My journey with Juju has reshaped my dreams, aligning them with a mission to create a world where love, support, and hope prevail against the odds.

Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.