Kate’s Take on Rare Care
— Kate Manger

Kate Manger lives near Chicago with her husband and three children. In 2016, her middle daughter, Caroline, was diagnosed with late-onset Pompe disease and began enzyme replacement therapy within her first year. Shortly after Caroline’s diagnosis, Kate’s oldest daughter, Evelyn, was diagnosed with alopecia universalis. Kate’s mission is to be approachable and helpful to those experiencing the world of rare for the first time. She is also a patient advocate for her daughters and works to ensure the diseases they have do not define them or limit their daily lives.

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Parenting a child with Pompe comes with worries about an uncertain future

As the mother of an 8-year-old with late-onset Pompe disease, I think about her future a lot, but not in an obvious or dramatic way. I’m not always sad or anxious; like any mom, I’m busy getting the kids to school, making dinner, and juggling the chaos of family…

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Our family’s experience with Pompe disease is just one of many

When you raise a child with a rare disease, it is easy to become consumed by your own version of that disease. You learn your child’s numbers, memorize the medical terminology, track appointments, and pay attention to every change that might mean something. You become familiar with the research, the…

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You’re not failing if you can’t remember every detail about your child

After my daughter Caroline’s Pompe disease diagnosis, our world changed overnight. I was desperate to learn about everything — enzyme replacement therapy, biomarkers, milestones, muscle strength, respiratory function, nutrition, dosages, and lab results. Terms that were once foreign became our daily language. There were appointments, questions, records,…

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How my daughter’s medical backpack became a symbol of freedom

A few days ago, I stumbled across Caroline’s old infusion backpack tucked away in the far corner of her closet. For a second, I barely recognized it — soft and pastel, the color of cotton candy, and shaped like a unicorn cat — it was so clearly a piece of…

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What ‘lucky’ really means for a child with Pompe disease

When people meet my daughter Caroline, they sometimes tell me how lucky she is. They say she is lucky to have such a supportive family. Lucky to have parents who advocate for her. Lucky to have access to the treatment she needs. Lucky to have a sister who looks…

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What a child with Pompe disease taught me about being a parent

People often tell me they can’t imagine what it’s like to parent a child with a rare disease. I know they mean well. Sometimes they say I’m stronger than they could ever be, or call me a superhero, or wonder how I manage it all. I understand what they’re trying…

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Raising a child who has never known life without Pompe disease

When people meet my daughter Caroline, they often call her brave. They see a little girl enduring enzyme replacement therapy every other week, the port in her chest, long infusion days, doctor’s appointments, blood draws, and tests. She smiles through experiences that would make most adults cringe, and people…

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Learning to translate the language of Pompe disease

When your child is diagnosed with Pompe disease, it’s like being caught in a storm of information. Suddenly, you’re overwhelmed with medical terms, appointments, and emotions. I remember feeling like I was trying to drink from a firehose. It took me months, perhaps years, to…


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