Our Batten disease journey carries on quietly, but with determination

When I think about March, I think about transition. It’s not fully winter anymore, yet it’s not quite spring, either. The air shifts, yet the cold lingers. The sun shines a little longer, but the ground remains hard. March teaches us something powerful: that growth can begin before anyone sees it.

Living with Batten disease feels a lot like that.

For new readers, my son Juju lives with CLN2 disease, also known as late infantile Batten disease, a rare, progressive neurodegenerative disorder. Our days are measured in infusions, seizure logs, therapy sessions, and moments we hold a little tighter, knowing how fragile they are.

Rare Disease Awareness Month just wrapped up, with its purple lights, proclamations, posts, and panels. Then March came, the hashtags quieted, and the world moved on. But families like mine certainly don’t.

Batten disease doesn’t pause when the awareness month ends. Disease progression doesn’t slow down because the calendar changes. Appointments don’t simply disappear, and advocacy doesn’t get any easier. March is when the real work begins again, with behind-the-scenes calls, research emails, legislative follow-ups, and grant revisions.

But there is also simplicity in quiet moments at the kitchen table, when I am both mother and advocate, praying and planning at the same time. March reminds me that just because we can’t see growth doesn’t mean it isn’t happening.

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Lives in motion

This year has already tested that belief. We’ve faced scientific hesitation and the sting of doors that didn’t open. We were reminded how hard it is to push innovation forward when funding is uncertain and time is not on your side. Batten disease families don’t have the luxury of waiting decades for solutions. Our children are progressing now.

In our family, we march — not because it’s easy or guaranteed, but because our children deserve relentless hope.

To my readers and supporters who’ve followed Juju’s journey through more than 108 brain infusions, focal seizures during treatment, school adjustments, and medication changes, I want you to know that your presence matters more than you realize. When you share a post, send a message, pray, or ask how Juju is doing, you are standing in this in-between season with us.

March is unpredictable. One day feels warm with possibility, and the next, a snowstorm rolls back in. That is the nature of life with a rare disease. We celebrate stable labs the same week we adjust medications. We hold gratitude and grief in the same breath.

Here’s what I’ve learned: True growth begins underground.

Before flowers bloom, roots strengthen. Before policies change, conversations happen behind closed doors. Before treatments evolve, someone has to believe it is possible. That’s where we are right now: building, connecting, and refusing to let awareness be performative.

Advocacy for Batten disease must be sustained, strategic, and loud, even when the spotlight fades. Our children are not seasonal causes. They are lives in motion.

As we move into the next season, I am excited to share that my husband and I will soon be launching a podcast. The idea has been in my heart for a long time to create a space to speak honestly about rare disease parenting, legislative advocacy, faith, science, burnout, and breakthrough. A place where families like ours can feel seen long after February ends. A place where experts, parents, and policymakers can sit at the same table and have real conversations. Awareness is the spark; action is the fire.

March may not be flashy, but it represents something powerful: commitment, continuation, and courage when the crowd thins.

So we will keep marching forward. For Juju. For every child living with Batten disease. For the families quietly navigating seizures and uncertainty tonight. For the treatments still in development. For the policies still being drafted. For the hope still growing beneath frozen ground.

Spring always comes. When it does, I want the roots of this movement to be unshakably strong.

Thank you for walking this season with us. We are just getting started.

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.