I am still fighting for new Batten disease treatment options

I am thankful to be Juju’s mother, and I am angry that Batten disease took so much from my baby. I thank God for the knowledge, willpower, and voice he has given me, even when that voice shakes. Some days I can talk about research and sound strong, but then all I want is to hold my son. I hate that I can learn all these medical terms and still cannot hold my baby.

Before Juju gained his wings, I was researching antisense oligonucleotides (ASOs) as a potential treatment approach for CLN2 disease, also known as late infantile Batten disease. Behind those letters was a mother hoping a therapy could reach her child in time. I wanted more years with him, more ordinary days I would have happily spent doing absolutely nothing except being his mommy. I still ache for that.

But I am still pursuing that research through the JuJu and Friends CLN2 Warrior Foundation. My son’s earthly vessel has finished its journey, but his spirit is here, and I am still his mother. I cannot explain how deeply that lives inside me. When I speak about continuing this work, I am thinking about Juju and the parents who are still hoping that a treatment will reach their children.

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Pooling our efforts

I need to say something that has been sitting heavy on my heart. I struggle with how divided our efforts can feel within the Batten community. It hurts to think about parents searching separately for answers when another family might have information that could help. I want us to be able to reach across our circles and say, “Here is what I know. Let’s figure out the next step together.”

I know how much we are all carrying. Some parents barely sleep because they are watching their children breathe, and some of us lie awake missing the sound of them. Nobody should have to prove their love by answering every email or joining every meeting. I am asking those of us who have something left to give to make it easier for another parent to find help.

I’m still invested in ASO research because I want to explore what may be possible for CLN2 disease. I want qualified scientists to assess which genetic variants might be suitable for this kind of treatment and what testing would be needed. I hope that knowledge could eventually help researchers find treatments for other variants. I know there are uncertainties, and I want honest answers about them so families can understand what might come next.

I want us involved in those conversations together. Imagine a parent asking about research funding, knowing that other families will help carry that question forward. Imagine being able to share a contact, explain something you learned, or help another family prepare for a meeting. We have learned so much through loving our children, and I believe that knowledge can help move this work forward.

And please remember the parents whose children have gained their wings. We still need to hear our children’s names. We still have something to contribute, even if we cry as we say it. Juju belongs in this community, and I need the love I carry for him to have somewhere to go.

So I am asking you to reach out. Share something useful with another Batten family, support an advocacy effort, or ask how you can help parents pursuing research. If you want to connect about ASO advocacy, I invite those conversations. We can begin with what we each know and decide on steps we can take together.

I am thankful that I still have the will to try, because some days the grief leaves me exhausted. I believe God gave me these gifts for a reason, and I want to use them for our children. Juju, Mommy misses holding you more than I can ever explain. You are forever 9, and I need the world to understand how much life that leaves out.

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.