How parent caregivers can hold on through CLN2 disease progression

From our trials have come strategies for surviving through Batten's dark days

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by Cristina Vargas |

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I never imagined I’d become fluent in a language built on seizures, regression, and uncertainty. But when late-infantile Batten disease (also known as CLN2 disease) entered my life, I felt like the ground had disappeared from under me. Nothing prepares a parent for this kind of diagnosis. There’s no road map, no script to follow, just a deep love for your child and a desperation to hold on to every moment.

As the disease progresses, so do the losses. One day your child is laughing or walking across the room, and the next day, those milestones are simply memories and don’t exist in the present. You watch the world shift for them, and all you can do is stay close, advocate fiercely, and love harder.

Batten disease takes in ways you don’t expect. Some days the grief is quiet and slow; other days, it seems to hit all at once.

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I often write from a mother’s perspective because that is who I am. I feel everything deeply. The worry lives in my chest. The exhaustion is always behind my eyes. I cry in silence while folding laundry or whisper prayers during sleepless nights. I’m constantly scanning, watching for new symptoms, trying to catch the next shift before it happens.

I’ve come to see this journey through my husband’s eyes, too, and it looks a little different. The weight on him is just as heavy, but it’s carried in quieter ways. He may not cry in front of others, but I’ve seen him stare at old videos of our son when he thinks I’m not looking. I’ve seen him try to fix what none of us can fix. He is the protector. The provider. He wants to solve it, and when he can’t, I know that breaks him in a different way.

I think I can generalize about all Batten disease dads. I know they grieve, too. They hurt deeply. They hold their children during seizures. They carry the same fear. In my view, they sometimes don’t talk about it because the world hasn’t made space for fathers to fall apart. But they’re in it, every step of the way. I see them as the ones who stay up researching, who build the medical equipment, who drive long hours to hospitals while trying to stay composed for everyone else.

This journey demands a lot from both parents, though I know some walk this path alone. And whether you’re a mom or a dad, you need to know that your feelings are valid. There’s no right way to cope. What matters is that you keep showing up, even when your heart is breaking.

Survival tips

Here are some tips I want to share from the ways we’re learning to survive the weight of this diagnosis.

Let yourself feel what you feel. That’s hard. But it’s OK to cry, be angry, be scared. You’re not weak for feeling broken. Strength does not mean pretending everything is fine; it means being real and still choosing to keep going.

Track the changes. Keep a notebook or use an app to record symptoms, side effects, and new concerns. It can help you feel more in control and gives your medical team valuable insight. You’re the expert on your child, and your notes matter.

Celebrate every single victory. If your child eats well that day or smiles or says a word, hold on to that joy. These moments are precious. They’re what get us through the darker times.

Ask for help. You don’t have to carry this weight alone. Find support from other rare families, from therapy, from friends who truly listen. Share the weight when you can. Your heart deserves care, too.

Make time for yourself. Make the time even if you can only find a short walk, a quiet prayer, or five minutes in the car with music. You’re not just a caregiver; you’re a human being with needs. Caring for yourself doesn’t mean you’re taking away from your child; it means you’re preserving your ability to keep going.

Keep your faith. Find something bigger than you to lean on. While for me it’s God, for others it might be the community they’ve built, the memories they hold, or the hope that better treatments are coming. Whatever anchors you, hold on to it.

This disease changes everything, yet it cannot take away the love you carry. It cannot erase the bond you have with your child. It cannot break the parent you’ve become.

To every Batten mom and dad out there, I see you. Whether you fall apart or hold it all together, whether you cry or stay quiet, you are not alone. We’re walking this road together, step by step, moment by moment, fighting for the ones we love most.

You are more than enough. You are a warrior.


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.

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