Giving thanks for every milestone as a CLN2 Batten disease parent

As Thanksgiving approaches, I find myself reflecting on the journey of parenting a child with a rare disease. Each day brings challenges that most cannot imagine, yet within those challenges lie moments of grace and milestones worth celebrating. Life with late-infantile Batten (CLN2) disease has taught me that gratitude is not just about the big victories, but also the small, quiet moments that remind me of our strength as a family.

Every infusion, every therapy session, every carefully timed medication carries the weight of hope and determination. Whenever my son, Juju, smiles, laughs, or shows even the slightest improvement in his abilities, it’s a reason to pause and give thanks. There are no shortcuts, no days off, and yet the fire we live in daily has cultivated a resilience I never knew I had. Each milestone, no matter how small, is a testament to his courage and our unwavering commitment to his well-being.

Thanksgiving for us is not just about tradition; it’s about honoring life as it is, welcoming change, and celebrating the love that binds us together. It’s about noticing the moments of progress that might otherwise be overlooked: a new word, a stronger step, or a day when fatigue doesn’t win. These moments are treasures, and learning to see them in the chaos has been one of the greatest gifts of this journey.

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The power of gratitude

Being a rare disease parent requires a balance between hope and realism, joy and exhaustion. It’s about showing up every day, even when it feels impossible, and recognizing the ways our children teach us about courage, patience, and unconditional love. Our family’s Thanksgiving may look different from others, filled with medical schedules, therapy plans, and hospital trips, but it is also full of gratitude for life, for progress, and for the love that sustains us.

I am also grateful for the community that surrounds families like ours — advocates, doctors, researchers, and fellow parents who understand the weight we carry. Their support reminds us that we are not alone, and that our efforts, though often unseen, contribute to a larger story of hope and change. Each conversation, each connection, and each shared resource is a reminder that even in the midst of the fire, a network of care is ready to lift us up when we need it most.

As we move through the holidays, I carry both gratitude and awareness. I am thankful for Juju’s milestones and for the strength our family has found in the face of adversity. I am mindful of the uncertainty that remains, and yet I choose to focus on the moments that shine — moments that teach me to welcome change, celebrate life, and honor the journey, however challenging it may be. Thanksgiving is a time to pause, reflect, and give thanks not just for what is easy, but for the resilience, courage, and love that rare disease parenting demands every single day.

This season, I am thankful for every breath, every smile, and every step forward. Life with a rare disease like CLN2 may be a fire we cannot escape, but it is also a fire that teaches us the depth of our love, the importance of hope, and the power of gratitude. Each day is a milestone and a gift worth honoring.

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.