Time should not be a luxury: A mother’s fight for justice
On Batten Disease Awareness Day, I'm promoting fair access to healthcare
As a mother of a child with a form of Batten disease, every day is a fight — not just against the disease, but against a system that wasn’t built to protect rare children, especially those from underserved Latino communities like mine. I never imagined I’d become a voice for families like ours, but I had no choice. When your child is diagnosed with something doctors can’t pronounce, you either stay silent or speak louder. I chose the latter.
Batten disease is a group of rare, inherited disorders that affect the nervous system. CLN2 — the form affecting my son, JuJu — begins in early childhood. The first signs can be subtle: a stumble, a word forgotten. Then come seizures, rapid cognitive decline, vision loss, motor deterioration, and other symptoms. Without intervention, most children don’t survive past their teenage years.
There is no cure. There is treatment, such as the infusions JuJu receives every other week to slow the progression. And for those who can access it, there is hope. Not every child gets that chance. The problem isn’t just the disease; it’s the gatekeeping around therapies, approvals, and coverage.
Rare disease doesn’t care what race or ethnicity you are, but I believe access to care often does. As a Latina mother navigating the Medicaid maze, I’ve witnessed firsthand how racial and economic disparities block some rare families from accessing timely, lifesaving care. I’ve spent hours on calls with insurance, weeks waiting for approvals, and months fighting systems that feel built to exhaust us into silence.
What’s more, a significant number of families affected by rare diseases are left with no option but to become their own fundraisers, organizing events, selling T-shirts, and launching GoFundMe pages, all in desperate hope of finding a cure. These are parents already carrying the unbearable weight of watching their child decline. The emotional toll is enormous, and yet we’re expected to also become researchers, marketers, and fundraisers just to give our child a chance. That alone should signal to lawmakers how broken the system really is.
Awareness and action
This Batten Disease Awareness Day — which is today — I’m calling on lawmakers to do more than wear orange. I’m asking them to act. The current federal budget bill would cut spending for Medicaid and the Affordable Care Act, causing many as 11 million Americans to lose coverage, according to NPR. Significant funding cuts for medical research have been proposed, as well. Meanwhile, the recently introduced Health Equity and Rare Disease Act of 2025, or HEARD Act, would allow for greater investments in rare disease research. We don’t need pity. We need policy.
I’m also proud to share that we’re launching a fundraiser for the JuJu and Friends CLN2 Warrior Foundation, a collaborative initiative designed to raise funds, support research, and bring more awareness to this fight. This foundation is more than a cause; it’s a movement. We’ll be sharing a sneak peek of our marketing campaign soon and calling on our community to stand with us, donate, and amplify our voice.
Batten Disease Awareness Day isn’t just about my son. It’s about every child who deserves more time, every family who deserves better answers, and every advocate who won’t stop fighting. If you’re reading this, please don’t turn away. Share JuJu’s story. Call your representatives. Learn the signs of Batten disease. Join us in demanding early screening, faster access, and true health equity for all rare families.
Because when it comes to Batten disease, time is everything — and none of us have enough of it.
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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