A mother’s dream for her child with Batten disease, written across heaven
Juju's mission on behalf of CLN2 did not end when he gained his wings
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Dear Juju,
A few days ago, I opened the column I hadn’t finished writing. It was sitting on my computer exactly where I’d left it. I’d been writing about your tremors getting worse and your upcoming infusion. I wrote about how Dad and I were doing everything we could to keep you comfortable and surrounded by love.
I never finished it, baby.
On May 24, Pentecost Sunday, you gained your wings. While I was busy writing about our future, God already knew I was writing our goodbye. Reading those unfinished words now feels surreal. How life changed so quickly. This entire experience feels like a dream I cannot wake from. I still expect to hear your laugh and see your smile. Words can never fully capture what you not being here now feels like. Your dad and I are both learning how to navigate a world without you in it.
I carry close to my heart the memory of how much love surrounded you during your final days. Dad and I held your hands for hours at Upstate Hospital. We cuddled you, kissed your forehead, and reminded you how deeply you were loved. At your service, neither of us wanted to leave your side. We sat with you as long as we possibly could. You looked like an angel peacefully sleeping, and that image is forever etched on my heart.
Still with us
I think about heaven often now. I picture you running everywhere without a wheelchair and without limitations. I imagine you laughing with your Batten warrior friends and experiencing complete freedom. Tell me, baby, are you running laps every day? Are you eating all the candy you want and showing everyone that Boss Baby attitude that made people fall in love with you?
Your spirit is still woven into every part of our lives. Faith has your blanket now and keeps it close to her heart. She has been dreaming about you, and I truly believe those are little visits from heaven. Serenity is too young to understand, but I see pieces of you in her every day. The other day she laughed, and for a moment, I could have sworn I heard you.
Dad and I still watch “The Boss Baby” and smile thinking of you. After visiting Faith at Upstate Hospital, we met the sister of Alex Baldwin, who does the voice of Boss Baby. There was a red cardinal on her van, and the moment I saw it, I felt your presence. Some people see coincidence. Mommy sees a hello from heaven.
I am thankful for the spiritual gifts God has given me. I know our physical vessels are temporary, but our souls are eternal. I feel you around me every day in signs, dreams, and quiet moments when your energy suddenly fills the room.
The hardest part is not wondering if you are still here. The hardest part is learning how to navigate this new relationship with you. Instead of holding your hand, I feel your presence. Instead of hearing your voice, I listen with my heart. It is an adjustment Mommy is still learning to make.
The signs you send are beautiful. Cardinals seem to appear exactly when I need them most. Dad has been having dreams about you, too, and I know those dreams bring him comfort. Songs play at the perfect moment and memories suddenly flood back when we need them. Your energy is so strong that it feels impossible to ignore.
You gave us nine precious years, my love. Those were the most beautiful years of my life. You taught me strength, resilience, faith, and unconditional love. The privilege of being your mommy will always be my greatest blessing.
There are things I wish I could have changed. I wish money never stood between children and potential treatments, that individual lives were valued as much as profits. I wish no parent ever had to watch a disease steal pieces of their child. Those thoughts fuel the fire behind my advocacy every single day.
One thing I know is that your mission did not end when you gained your wings. If anything, it became even bigger. Your spirit is the driving force behind every advocacy meeting, every conversation about research, and every effort to help families facing CLN2 disease. Children will always come first. Your legacy is the reason I continue pushing forward, and the reason I refuse to give up on the fight for better treatments and future cures.
I promise you something, baby. I will not stop fighting for children living with CLN2 disease. I will not stop advocating for rare disease families. I will continue speaking your name and carrying your legacy forward. I will fight until my last breath because children like you deserve better.
You changed lives and inspired people across the world without ever realizing it. Your legacy is bigger than this disease and stronger than death itself. Love like yours does not disappear when a soul goes home.
Keep running those laps in heaven, my sweet boy. Keep laughing with your warrior buddies and sending those beautiful signs when we need them most. Every beat of my heart belongs to you, and I will love you with all my heart and all my soul forever and always.
Love always and forever,
Mommy
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.
Emilia Gonzalez
This was beautifully written you truly are so powerful and I hope that as each day goes by that weight of him being gone gets lifted I couldn't go through this and come out on top I would have broken. You truly are an inspiration keep fighting.we here with you girl.
Cristina Vargas
Emily, thank you so much for your kind words. They truly mean a lot to me. ❤️ The weight doesn’t necessarily get lighter, but I’ve learned to carry it differently with God’s strength, my family, and this incredible community beside me. I promised Juju I would continue being his voice, and that’s exactly what I plan to do. Thank you for walking alongside me. It means more than you know. 🙏🏼💙
Susan Klee
Thank you for sharing the story of your precious son.
Our Julie, Cln2, born, 1982, passed. 1993.
The early years of Batten disease, families grew very close in the years following. Our family has been a devoted supporter of BDSRA since its founding. I am sorry your family is going through this horrible nightmare for the second time, sending prayers for comfort . Susan Klee
Cristina Vargas
Susan, thank you so much for sharing Julie’s story with me. My heart aches knowing your family has carried this loss for so many years. Batten disease has connected so many of us in ways we never wished for, yet this community has become such a source of strength. Thank you for your family’s longtime support of BDSRA and for keeping Julie’s memory alive. Sending you love and prayers as we continue to carry our children with us every single day. ❤️
Dawood Shaikh
Dear Cristina,
There are no words powerful enough to fully hold the depth of your love or the weight of your loss—but please know that your words were felt deeply. We truly feel your pain, and we want you to know that you are not alone in this.
Your love for Juju shines through every sentence, every memory, and every promise you’ve made to continue his legacy. It’s clear how deeply cherished he was and always will be. The strength, faith, and devotion you carry are nothing short of extraordinary, even in the midst of unimaginable heartbreak.
We stand with you and your family—with Dad, with Faith, with Serenity—and with every family walking this painful path. We are all in this battle together, holding onto each other, lifting each other up, and carrying forward the love and light of these beautiful children.
Juju’s story, his spirit, and your voice will continue to inspire and bring strength to so many. We are with you—today, tomorrow, and always.
With love, compassion, and solidarity 🤍
Dawood.
Cristina Vargas
Thank you so much, Dawood. Your words truly touched my heart. ❤️ Some days I still struggle to believe this is our reality, but knowing Juju’s story is reaching people and reminding other families they’re not alone gives me strength to keep writing. My greatest hope is that his legacy continues to bring awareness, compassion, and one day a cure for Batten disease. Thank you for standing with our family. It means more than you know.