How to Care for a Child With Pompe Disease

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Navigating School and Independence

Because Pompe disease affects every child differently, there’s no one-size-fits-all guide to advocating for your child. You’ll have to engage educators, coaches, and camp counselors on your child’s specific needs. Whether symptoms are obvious or hidden, clear communication can help prevent a child from being unfairly labeled or sidelined.

With that said, a majority of children with infantile-onset Pompe disease attend and succeed at school, and many receive at least one accommodation in their regular education classrooms.

Educate Teachers and Coaches

Meet with the school’s staff before the first day to provide some quick education about Pompe disease and how it impacts your child. Symptoms like fatigue may not be visible, so you’ll need to explain that your child isn’t being lazy or not trying, rather they need time to rest. Marrero-Stein also suggests pointing out any speech delays to prevent any stigma or bullying.

Conduct a Dry Run of the Building

Walk through the building before the school year starts. Identify accessible bathrooms, ramps, long walks, and heavy doors, and let your child practice explaining their needs to adults in a low-stress setting.

Formalize Support

Whether your child needs an individualized education program (IEP) or 504 plan depends on whether they require specialized instruction or just physical access.

A 504 plan is often sufficient for needs like a second set of textbooks (to avoid heavy backpacks), elevator access, or a pass to leave class early to avoid crowded hallways. However, an IEP may be helpful if your child requires school-based speech, physical, or occupational therapy. It also provides a dedicated classroom aide for help with mobility, eating, or using the bathroom.

You’ll also want to discuss how to handle absences due to ERT or specialist appointments.

Coordinate With the School Nurse

Your relationship with professionals like a school nurse or camp medical staff will be important. Set up an orientation meeting to discuss pickup areas, emergency protocols, and specific daily care requirements.



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