Part of our journey was learning how to talk to our children about Pompe

When a child is diagnosed with Pompe disease, they’re not the only person affected. The disease changes everything for the entire family. Suddenly, schedules and priorities shift. One of the hardest things for me as a parent was figuring out how to talk to my other children about what was happening.

My second daughter, Caroline, was born with Pompe. At the time, my oldest, Evie, was just 2 years old. Initially, she was too young to understand what was happening, so I didn’t have to explain much. However, as time passed and she began to notice the extra doctor appointments, the medications, and Caroline’s port, her curiosity grew, and questions began to come up.

Looking back, because Evie was so young when Caroline was born and diagnosed, I didn’t initially think about how to talk to her about Pompe disease. But her questions made me realize I needed to be more intentional, honest, and age-appropriate. This would be an ongoing conversation that would evolve as she grew.

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I learned that Evie didn’t need to know every medical detail. She just needed things explained simply and clearly. I told her, and later Caroline, too, that Pompe disease is an illness some people are born with that affects how the body’s muscles work. The medicine Caroline gets through her port helps her body by doing what her muscles can’t do on their own.

I also made sure to explain that Pompe disease isn’t contagious; you can’t catch it from someone else. I tried to take away the mystery by explaining things in a way Evie could understand. That helped ease some of the fear and worry Evie might have felt about what was happening to her sister.

Family dynamics really do change when a child is diagnosed. Children notice so much, even if they don’t say it out loud. Some siblings might keep their feelings to themselves because they don’t want to add more stress for their parents. Others might step in to help with treatments or become the family cheerleader. It’s wonderful to see siblings support each other, but sometimes the emotional weight is just too much to bear. As caregivers, we have to remember to watch for that and take care of everyone’s mental load, including our own.

In our situation, only one of my children has Pompe disease, but I know some families who have more than one child affected, since it’s genetic. That adds another layer of complexity. In those families, conversations are different. There are multiple kids going through similar treatments, facing the same challenges, and wondering about the future together.

This can be even more challenging for parents, who have to balance being fair with recognizing each child’s unique experience. Every child goes through the disease differently, with their own symptoms, responses to treatment, and feelings. It’s hard for siblings not to compare what they’re going through.

But it can also bring siblings closer together. They understand each other in a way that most kids never will. They know what it’s like to take medicine, sit through appointments, and answer questions from classmates. That shared experience can be a powerful source of support.

In our family, my girls don’t share the same disease. Evie has alopecia universalis, a rare autoimmune condition that causes total hair loss on her scalp, face, and body. Caroline has late-onset Pompe disease. With alopecia, Evie is healthy and expected to live a normal life. That is very different from what we face with Pompe disease.

Alopecia and Pompe disease are definitely a big part of our lives, but we don’t let them define our family. I keep coming back to these conversations as my girls grow, making sure they know they are both valued and supported. As a caregiver, I try to help them see that their uniqueness is something special. It helps them support and stand up for each other.

No matter if you have one child or several, or if your family has more than one diagnosis, like ours, it’s important for siblings to know they are part of the story, too. They aren’t just bystanders. Siblings often become the strongest and most compassionate advocates their brother or sister could ever have.

Note: Pompe 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 Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.