Research takes time that our children with Batten disease don’t have
No parent should ever have to measure hope against time
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Every Batten disease parent learns that time is the most valuable thing we have. We stop measuring life by birthdays and holidays and begin measuring it by the memories we can still make before the disease changes everything again. Every smile, laugh, and hug becomes priceless. No amount of money can buy back the time it steals.
When my late son, Juju, was diagnosed with CLN2 disease, also known as late infantile Batten disease, our family entered a race against time. Every doctor’s appointment, Brineura (cerliponase alfa) infusion, and research update became another reason to hope a breakthrough would arrive before the disease progressed further. We held on to hope with everything we had, even as other children with Batten disease gained their wings.
Our community has witnessed incredible advances in rare disease research, and I truly respect the scientists dedicating their lives to changing the future. Gene therapy has given many families hope that once seemed impossible. Progress deserves to be celebrated, although urgency must never be forgotten. Batten disease does not slow down.
Our community has mourned the loss of far too many precious children. Every one of those warriors had parents who would have sacrificed anything for one more birthday, one more bedtime story, or one more hug. Juju is one of those beautiful children whose legacy lives on through every life he touched. Each loss reminds me that every day matters when a child is living with a progressive neurodegenerative disease.
Children before profits
Developing treatments is one of the hardest challenges in medicine, and I will always appreciate every researcher committed to helping our children. My frustration has never been with the scientists working tirelessly behind the scenes. My heart struggles with the reality that funding, regulations, and development timelines often move far more slowly than the disease itself. Every delay represents time our children simply do not have.
Gene therapy continues to advance as research evolves. Other therapeutic approaches also require sustained attention and investment. Families affected by Batten disease rely on progress across all areas of study. Each potential treatment should be fully explored.
That belief is one of the driving forces behind the Juju and Friends CLN2 Warrior Foundation. My mission is to continue raising awareness, advocating for research, and supporting efforts that move potential treatments closer to children who cannot afford to wait. The phrase “children before profits” has become the heartbeat of everything I do. Those words remind us that children should be central to every decision.
Nothing will ever compare to the pain of knowing Juju’s earthly vessel is no longer here for me to hold. That heartbreak now fuels every column I write, every advocacy meeting I attend, and every conversation I have about Batten disease. I cannot stop thinking about the parents who are still living the life I once lived, desperately praying that science reaches their child before this disease does. No parent should ever have to measure hope against time.
I believe Juju’s soul is with God, completely healed and finally free from Batten disease. That faith brings peace to my heart, although it will never fill the space that longs to hear his laugh, hold his hand, or watch him smile again. Love does not end when our children’s earthly vessels are no longer here. It’s the reason I continue fighting for every child and family still walking this road.
Juju gave me the nine best years of my life, and now he has entrusted me with a mission that will outlive us both. I promised my son that his story wouldn’t end with a CLN2 diagnosis or the day his body could no longer carry his beautiful soul. Every column I write, every family I encourage, every dollar that’s raised for research, and every conversation that’s had about Batten disease is part of the legacy he left in my hands.
My greatest prayer is that one day parents will stop counting the warriors who have gained their wings and instead celebrate the children who were given a chance to grow up. Until that day comes, I will continue using my voice, my foundation, and Juju’s legacy to remind the world that our children cannot wait, and they must always come before profits.
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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