I won’t stop fighting for my son’s treatment — and his future

I remember the exact moment my world changed. It happened in 2022, on a day that started like any other but ended with a diagnosis that shook me to my core.

The doctor’s words blurred together, my heartbeat pounded in my ears, and a wave of emotions crashed over me, including confusion, fear, grief, and an overwhelming sense of helplessness. My son JuJu has CLN2 disease, also known as late-infantile Batten disease. I wanted to cry, scream, and bargain with the universe — but there was no time to break down. From that moment on, I was thrust into a battle I never imagined fighting, not just against his disease, but also against an inflexible healthcare system that held his future in its hands.

JuJu’s treatment wasn’t experimental. It also wasn’t optional; it was the only thing keeping him from deteriorating while we waited and prayed for a cure. But even with Medicaid, the program designed to support families like mine, we encountered obstacle after obstacle — each one a reminder that we had to constantly prove my son’s life was worth the cost of his medicine.

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Our most recent doctor’s appointment was another hoop to jump through. We weren’t there for new medical insights or a path forward, but rather to justify why my son deserved to stay on the treatment that had given him a semblance of normalcy. I sat across from the doctor, holding my breath as she carefully documented every symptom and health struggle that JuJu has. She wanted to make sure the paperwork was highly detailed.

It infuriates me that my child’s well-being is subject to a bureaucratic system that often prioritizes cost containment over care. Someone in an office somewhere, who has never met my son, never watched him play, and never seen what this medicine has done for him, gets to decide whether he can continue with his treatment. No matter how much progress JuJu makes, we constantly have to prove he is sick enough to need his treatment. How is this fair?

The financial strain of JuJu’s healthcare is suffocating. The emotional toll is even worse. Some nights, after JuJu is asleep, I sit in silence and let the fear creep in. What if his treatment is denied again? What if we can’t fight back quickly enough? What if the system that’s meant to protect him fails him? I feel the weight of this fight in my bones.

But I refuse to let the fear win. I’ve learned that being a mother to a child with a rare disease means becoming more than just a caregiver; I’m also his advocate, his voice, his fighter. I’ve immersed myself in the complex, heartless world of medical policies and insurance appeals. I’ve connected with other parents who are in the same battle, found solace in support groups, and leaned on organizations like the EveryLife Foundation for Rare Diseases.

For parents facing this same nightmare, I want you to know that you aren’t alone. The system is broken, but we are stronger together. Find your tribe: other parents who understand and advocacy groups that fight for your child’s rights. Document everything. Push back against denials, no matter how exhausting it is. Take breaks when you need to, but never stop fighting.

I dream of a future where parents don’t have to beg for the care their children need, where navigating Medicaid or any healthcare system isn’t a battle, and where no family has to choose between financial ruin and their child’s survival. Until then, I will keep pushing. I will keep advocating. I will keep fighting for JuJu — and for every child like him.

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.