Our family’s fight for hope, treatment, and everyday joy

Every morning, I look into my son JuJu’s eyes and see a fire that no diagnosis can dim. He’s 8 years old and full of light, love, and resilience. JuJu has a rare neurological condition called CLN2 disease, also known as late-infantile Batten disease. It affects his speech, movement, and vision. But JuJu is not defined by this diagnosis. He is the reason we keep going.

My husband, Jonathan, and I never imagined we’d have this life, but here we are, the parents of three incredible children, each carrying their own story of strength. Our youngest, Serenity, who is just 1, was born with a congenital heart defect called pulmonary atresia with an intact ventricular septum (PA/IVS). Our oldest child, Faith, 15, is navigating the emotional weight of adolescence while living in the middle of a medically complex family.

Each of our children teaches us lessons about faith, patience, and unconditional love. Beyond our traditional roles as parents, we’ve evolved into advocates, caregivers, case managers, researchers, and above all, protectors. In JuJu’s case, we’ve also become like investigators, as he has an exceptionally rare CLN2 gene mutation. Because it’s so rare, research is limited, so we had trouble getting definitive answers to our questions. So I embarked on my own research journey.

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I’ve spoken with specialists across the country, read scientific journals, connected with rare disease families, and reached out to researchers. Behind the science is my child, and if my husband and I don’t fight for him, who will?

With every appointment, every medication, and every therapy session, we are building a life around making sure our son has the best chance possible. In the middle of it all, we make room for our music sessions, silly voices, long cuddles, and everything else that makes life feel whole again. My opinion is that joy belongs in every family, including those with rare diagnoses.

Finding strength

This journey has stretched us in ways we never expected, but it’s also revealed a strength we didn’t know we had. Jonathan is my anchor. Patient, steady, and deeply loving, he is exactly who our children need. Together, we’ve built a home full of compassion, courage, and relentless hope.

However, we also see how broken our healthcare system truly is. From delays in access to treatments to insurance denials, to overwhelming out-of-pocket costs, families like ours are forced to jump through endless hoops just to keep our children stable.

Why do we choose to focus on the rarity of our children or the complexity of research? Sometimes it’s simply the fact that someone, somewhere, decided that our children were not worth investing in.

Here’s what I want the world, and the medical field, to hear: Stop labeling children with rare diseases as hopeless. Stop assuming their stories are already written. The truth is, if the right treatments were approved more quickly, if the resources were shared more widely, and if families had the support they needed, so many children would be living fuller, better lives.

JuJu is not a tragedy, and he is certainly not a burden. He is an educator, a warrior, and a reminder that even in the face of uncertainty, love prevails. We do not seek perfection; we seek progress.

Why should we have to wait years for medicine that might already exist? Why should we have to fundraise or beg for treatments that might be stalled by paperwork and red tape?

Our family deserves to live — not just survive, but live! We deserve to have fun, to feel free. To build memories without a mountain of medical battles behind every moment. We deserve the chance to just be a family.

I know our children are medically complex, but they are also radiant, vibrant, and full of purpose. They are not statistics. They are not case numbers. They are lives worth fighting for.

And so we fight with love, faith, and everything we’ve got for JuJu, Serenity, and Faith — and every other child whose diagnosis doesn’t yet have a treatment. And we fight for every parent trying to hold it all together.

Medicine shouldn’t take years. It shouldn’t cost a fortune. It should be accessible, because time matters. Lives matter.

We’re not just surviving, we’re pushing for a world where families like ours feel seen, supported, and free.

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.