United for change: Advocating for greater rare disease awareness

This time of year holds a special place in my heart and fills me with gratitude, determination, and a deep sense of purpose. Rare Disease Awareness Month, observed every February, isn’t just a time to reflect on my journey as a mom. It’s also an opportunity to consider how I’ve grown as an advocate for my son, who bravely battles CLN2 disease, also known as late-infantile Batten disease.

My kids have always been my biggest inspiration, guiding me even in the darkest times. When my youngest was diagnosed with this rare and devastating condition, our world turned upside down. It was a reality I never imagined — a plunge into an ocean of uncertainty, fear, and heartache that felt almost overwhelming.

But in that moment of despair, I made a choice: Instead of letting this diagnosis define our lives, I would take action. I was determined to find the best care for my son, make sure he got the support he needed, and raise awareness for families like ours.

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The road was tough, each challenge more difficult than the last, but I refused to give up. I started talking to other families facing similar struggles, and through those conversations, I realized something important — we weren’t alone. We were all in this together, united by our shared experiences, hopes, and determination to fight for our kids.

Together, we formed a powerful group, advocating for the rights and needs of families affected by rare diseases. We became warriors for our children, refusing to let them face this battle in silence. Our voices rose together, demanding recognition, support, and change.

It was through this collective effort that we started to make a real difference, not just in our own lives, but in the lives of countless other families who felt isolated and alone. The support I’ve received from friends, family, and fellow advocates has been incredible.

Each kind word, each shared story, and each act of kindness has been like fuel for my passion and commitment to this cause. Together, we’re making waves of change that go way beyond our community. I’m constantly inspired by the strength and resilience of the people around me.

It fills me with hope that we’re making progress toward a brighter future for families affected by rare diseases. As I think about this journey, I’m so grateful for the lessons I’ve learned along the way. Life has become like a tightrope walk, where I’m juggling being a mom and a wife, advocating for my son, and taking care of myself.

Each day brings new challenges, but I take pride in how I handle them. I want my kids to see the importance of never giving up, even when things get tough. I want them to understand that we can make a difference, no matter what.

It’s important for them to know that our voices matter and that we can initiate change. My advocacy goes beyond my family; it’s about all the people affected by rare diseases. I’ve seen firsthand how hard it can be to get the healthcare and resources they need.

That realization made me want to become a lawyer. I want to fight for legislative changes that will make the lives of people with rare conditions better. I dream of a world where everyone is treated with respect and kindness, and where their voices are heard.

As we celebrate Rare Disease Awareness Month, I want to thank everyone who’s contributed to this important cause. Your support means the world to me, and together, we can make a difference.

Let’s keep sharing our stories, raising awareness, and speaking up for those who might feel unheard. Together, we can pave the way for understanding, empathy, and change, making sure no family has to go through this alone. I’m so hopeful about what we’ve accomplished so far, thanks to all of us.

Until we find a cure for CLN2 disease, I’ll keep fighting for what’s right. Our journey might be tough, but it’s also filled with love, strength, and the unbreakable bond we share as a community.

Let’s stand together, united in our mission to make a difference in the lives of those affected by rare diseases. Every voice matters, and together, we can create a brighter, more inclusive future.

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.