For our rare disease family, February is about love, advocacy, and unity
Love isn't defined by romance, but by resilience
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February is often associated with love: hearts in store windows, sweet messages exchanged between couples, and a reminder to cherish the people closest to us.
For rare disease families like ours, February carries another meaning: Feb. 28 is Rare Disease Day. The entire month becomes a time when the world briefly turns its attention to conditions most people have never heard of. For our family, February is both a season of love and a time for awareness.
It also carries the memory of a Batten disease diagnosis that changed everything.
A life-altering reality
In 2021, we sat in a specialist’s office searching for answers about our son, Juju. We had noticed developmental changes: Words that once came easily were slipping away, coordination seemed different, and a quiet instinct told me this was more than a delay.
When the doctor finally said, “CLN2 disease,” which is also known as late infantile Batten disease, the room shifted. He carefully explained that it is a rare, fatal, neurodegenerative disorder. It is progressive. Children lose previously acquired skills. It entails seizures, vision loss, and shortened life expectancy, and there is no cure.
I remember gripping the arm of the chair as if it could keep me steady, and looking at my husband to see the same disbelief reflected back at me. We had walked in hoping for therapy recommendations but walked out carrying a life-altering reality. In that moment, love changed — not because it had disappeared, but because it had to grow stronger.
News like that doesn’t allow space for gentle processing. Survival mode activates immediately. We researched treatment options, learned about enzyme replacement therapy, reorganized our lives around appointments, infusions, and specialists, and memorized medical language we never imagined we would need to know.
What I didn’t fully grasp then was how much that diagnosis would test our marriage.
Rare disease enters every corner of a home: Sleep patterns shift, finances strain, emotional reserves run thin. Grief doesn’t visit just once and then leave; it returns in waves. Every lost skill is another reminder, and every missed milestone prompts quiet aching.
Fear can show up as frustration, exhaustion can create distance, and anticipatory grief can silence even the strongest voice.
There were nights when one of us carried hope while the other carried heartbreak. Conversations were heavy with questions about the future, and in some moments, the weight of uncertainty felt unbearable. Staying connected required intention.
Love in a rare disease marriage doesn’t sustain itself on autopilot. It demands honesty, humility, and the courage to say, “I am overwhelmed,” instead of masking pain with anger.
Then came medical challenges with our daughter Serenity, as well. Parenting medically complex children stretches a family in ways few people understand. The emotional bandwidth required is enormous. Constant vigilance becomes the norm, appointments overlap, and advocacy multiplies. The pressure can easily fracture a relationship.
Our children deserve unity. They deserve to feel stability in a world that often feels unpredictable. They deserve to see partnership modeled in strength, not silence. So February reminds me that love isn’t defined by romance, but by resilience.
It means sitting side by side during infusions, taking turns resting so the other partner can recharge, and choosing patience during seasons of grief. Our advocacy grew directly from that love — a love expressed not just in words, but also in action.
Fighting for Juju means more than managing his medical care. It means engaging with researchers and advancing biotech innovation. It means learning about policy, understanding legislation, and ensuring that rare disease families are represented in the rooms where decisions are made. It means building our foundation so that other parents feel seen and supported.
Advocacy isn’t separated from our marriage. It is an extension of it.
Standing together
When we stand together at events, speak publicly about CLN2 disease, or connect with lawmakers and industry leaders, we are reinforcing the same commitment we made to each other years ago: We’ll stand together, protect our family, and build something that outlives fear.
Rare Disease Day is important, but awareness must lead to action. Research funding, equitable access to therapies, and policies that strengthen families are essential. When systems fall short, the burden lands inside the home, and strong partnerships become the last line of stability for a child facing a progressive diagnosis.
Batten disease changed the trajectory of our lives. It altered our plans, reshaped our future, and clarified what truly matters. Love isn’t fragile in this space; it is forged. Forged in hospital hallways, late-night conversations, and shared grief and determination.
February no longer represents a single day of celebration in our home. It now represents endurance, advocacy, and a marriage tested and refusing to break.
Choosing each other is not a sentimental gesture, but a strategic one. It protects our children, strengthens our advocacy, and sustains our ability to fight for the research and policy change that families like ours urgently need.
In a world where rare diseases are often overlooked, love inside the home becomes a force multiplier. A united marriage creates stability, stability fuels advocacy, and advocacy drives change. That is what February means to me now.
It’s about love that doesn’t retreat in the face of a diagnosis, that grows louder when the future feels uncertain, and that stands firm, speaks boldly, and refuses to let rare disease define the limits of our family.
That kind of love is not seasonal. It is relentless.
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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