Hope and resilience: Parenting a child with CLN2 disease

As the new year dawns, I find myself reflecting on the hopes and dreams I hold for my child, who is bravely navigating the challenges of CLN2 disease, also known as late-infantile Batten disease. Each year brings a mix of anticipation and anxiety, and this year is no different.

As a mother, I’ve learned to cherish the small victories while bracing myself for the hurdles that lie ahead. CLN2 disease is a rare neurological disorder that has turned our lives upside down.

It’s a degenerative condition, meaning it steals away the milestones that most parents take for granted: the first steps, the first words, and the ability to play without fear. My child, once so full of life and laughter, now faces daily struggles that often leave me feeling helpless.

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As I watch my child grapple with challenges that are so complex and daunting, my heart aches with a mix of sorrow and determination. This year, my hope is rooted in the power of awareness and advocacy.

I dream of a world where more people understand Batten disease and researchers are funded and empowered to explore new treatments. I envision raising awareness in our community, sharing our story, and connecting with other families who are walking a similar path.

We are not alone in this fight, even when it feels that way. I hope to organize community events that shine a light on our journey, bringing people together to foster understanding and support.

As a mother, it’s hard to keep the faith when the prognosis can be so grim. Each day, I scour the internet for news of clinical trials, new medications, or therapies that could change the course of this disease.

I dream of my child having access to cutting-edge treatments when discoveries translate into tangible help for families like ours. It’s a hope that fuels my advocacy efforts, pushing me to reach out to researchers and tirelessly support organizations.

However, the road is not just paved with hope. Some hurdles loom large, casting shadows over our dreams. The emotional toll is significant; it’s not just the disease itself but the weight of uncertainty that we carry.

Every doctor’s appointment feels like a double-edged sword marked by the hope of new information and the fear of bad news. It’s a roller coaster of emotions without respite.

I often find myself grappling with feelings of isolation, as friends and family may not fully grasp the gravity of our situation. I yearn for understanding, for someone to genuinely ask how we are doing, and to listen without judgment.

The financial strain is another hurdle that can’t be ignored. The costs of treatments, therapies, and equipment are staggering, and navigating insurance can feel like an insurmountable task.

I dream of a day when families like mine aren’t burdened by financial worries and access to necessary care is a right, not a fight.

Fundraising efforts and community support have become lifelines, but they also add an element of stress as I juggle my time between advocacy and my child’s day-to-day needs. As I look ahead, I dream of creating beautiful memories with my child despite the challenges.

I envision moments filled with laughter, joy, and connection: family outings at the park, quiet evenings reading together, or simply cuddling on the couch while watching my children’s favorite movies. I want to capture every smile and every giggle and remind my children of their strength, resilience, and the love that surrounds them.

In this new year, amid the hurdles and the heartaches, I cling to hope. I hope for progress, understanding, and a future where my child can thrive.

As a mother, I will continue to fight fiercely for my children’s dreams, reminding myself that even in the darkest moments, there is light to be found. This year, I choose to embrace both the challenges and the joys, knowing that each day is a step forward in our journey together.

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.