Rising up: Advocating for my son and the CLN2 community

My story begins with my most precious gift: my son. Like any mother, I dreamed that his future would be filled with laughter, adventures, and boundless possibilities. However, our reality took a sharp turn when Juju, my son, was diagnosed with late-infantile Batten disease (CLN2 disease), a rare and devastating neurological disorder.

In that moment, my world shifted, but so did my resolve. I became determined to advocate for my son and the entire CLN2 community. Understanding the complexities of this disease ignited a fire within me. I wanted to ensure that my son and others wouldn’t have to fight this battle alone.

Part of my advocacy work involves collaborating with a biotech company to explore and potentially create treatments for those in need. My persistence in this mission stems from a profound belief that every voice matters, and I’m grateful that God has given me the gift of voice to advocate for those who cannot advocate for themselves.

I’m dedicated to using all my gifts and abilities to raise awareness, foster connections, and drive change in the field of rare diseases. It’s my passion to ensure that every child and family affected by these conditions has access to the hope and treatments they deserve.

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However, the journey has been fraught with challenges. There have been moments of uncertainty, times when funding seemed elusive, and instances when I felt overwhelmed by the enormity of the task ahead. Yet each time I contemplated giving up, the thought of my son’s face and the faces of other children with CLN2 disease sparked a renewed sense of purpose.

I refused to allow despair to take hold. My love for my son and my commitment to the CLN2 community only grew stronger. Every setback served as a learning experience, and I quickly realized that this fight was bigger than my son alone. It was about building a community, raising awareness, and rallying support. I started connecting with other parents, caregivers, and advocates who were equally passionate.

Together, we voiced our concerns to researchers and pharmaceutical companies, urging them to prioritize CLN2 and consider the immense potential for innovative treatments. With every email sent, every petition signed, and every fundraising event organized, our collective efforts began to resonate. Social media has become a powerful tool in our advocacy.

I began sharing our journey through blogs and social platforms, detailing both the heartbreak and the hope we experienced. I found strength in the stories of other families. With every post that went viral, we fostered a sense of community that transcended geographical barriers — a movement that would not be silenced. We demanded attention and inspired others to join our cause, believing that together, we could spark change.

As challenges continued to arise, I leaned into my determination. I told myself that giving up was not an option — my son deserved better. The same goes for every child facing the devastating impact of CLN2. I remind myself and others that our fight is a marathon, not a sprint.

Each small victory accumulates and helps us build momentum toward our ultimate goal: a breakthrough in treatment options for CLN2 disease. This journey has taught me the importance of resilience, collaboration, and unwavering hope.

I know the road ahead may still be long, but I’m committed to making a difference for my son and countless other families. My plea to anyone reading this column is to believe in the power of community and the impact we can have when we refuse to give up.

Together we’re strong, and together we’ll continue to push for the advancements and recognition that the CLN2 community desperately needs. I firmly believe that as long as there’s hope, there’s a way.

With love and tenacity, I’ll fight for my son and every child affected by CLN2 disease. My journey is just beginning, and I’m ready for whatever challenges lie ahead.

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.