Processing grief so that it becomes fuel for Batten disease advocacy

There is a loneliness that comes with losing a child that words cannot explain. Since my son Juju gained his wings, the world has kept moving while part of my life has stopped. Some mornings, I forget for a few seconds, then reality returns and breaks my heart again.

I’ve written before about the unique loneliness of missing my son in heaven, because love does not always mean understanding. I can sit beside someone who loves me and still feel completely alone.

Underneath that loneliness, another emotion has grown stronger: anger. I’m not talking about hatred, and I refuse to become bitter. I mean the anger of watching attention fade, support quiet, and promises disappear as everyone returns to ordinary life. I can look calm while inside I am asking how life keeps going when part of mine stopped forever.

Grief makes me question things I never questioned before. I can laugh and feel guilty, enter Juju’s room and lose my breath, or see a date and feel my body remember what my mind is trying to survive. People mean well, yet the calls, meals, and check-ins often fade after the first weeks. I don’t blame anyone for not understanding something I would never wish on another mother. Still, grief has no calendar, and time passing does not make me less of a mother or Juju less important.

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Aug. 5, 2026 Columns by Cristina Vargas

Behind the Batten disease advocate is a grieving mother

Transformation is not neat or painless

As I’ve previously noted, research takes time that our children with Batten disease don’t have, and those words mean something different now. When Juju was physically here, every appointment, infusion, and research update carried hope that something might reach him in time. Now I understand the other side of that clock, the side no parent wants to reach. That truth follows me into every advocacy conversation.

CLN2 disease, also known as late infantile Batten disease, is a rare neurodegenerative condition related to changes in the CLN2 gene and the production of a lysosomal enzyme called TPP1. Its progression can affect movement, language, and vision and lead to seizures, among other neurological consequences. Brineura (cerliponase alfa) is an enzyme replacement therapy that can slow functional decline, but treatment is not a cure. I will always be grateful for every advancement that gives a child more time or more moments with the people who love them. A mother who watched this disease take from her child cannot hear “progress” and believe the work is finished.

This is where my grief is changing me. Some days I answer emails, discuss research, and sound strong while tears sit behind my eyes. Functioning is not healing, and advocacy does not erase the empty space Juju left behind. It gives that pain somewhere to go. Juju was never simply a diagnosis, infusion schedule, wheelchair, or statistic; he was my son, my beautiful boy, and my teacher.

I do not want his legacy to become a photograph people pause on before scrolling. I want his name attached to research, family support, awareness, better treatments, and eventually a cure. I want the mother searching online in the middle of the night to know that mothers before her fought like hell for her child, too. I want researchers to remember that behind every sample, mutation, chart, and clinical outcome is somebody’s baby.

Maybe that is what my anger is becoming: fuel, although the transformation is not neat or painless. I do not wake up inspired every day; sometimes I wake up exhausted from carrying a reality I still do not want to accept. I cannot change the ending of Juju’s earthly journey, but I can make sure the world keeps hearing his name and understanding why children with Batten disease deserve urgency. The fight gives my grief direction without asking me to hide it.

I am still Juju’s mother, and motherhood did not end when he gained his wings. I am grieving, angry, tired, loving, and determined, sometimes all within the same hour. This fight is for Juju, every Batten disease warrior still here, every child who gained their wings, and every parent learning to carry love and grief together. My grief is heavy and my anger is real, but both have become fuel. As long as I have a voice, Juju’s legacy will never be silent.

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.