Meet Kaia

Kaia is one of three siblings with Pompe disease. They received a Duke Scholarship form Grant's Giants and were all seen for the first time in the Pompe clinic at Duke in October of 2024. As a result of these appointments it was determined that Kaia will be starting Enzyme Replacement Therapy (ERT) as soon as possible. There is no cure for Pompe disease but ERT slows the progression of the disease.

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As healthcare costs continue to soar, families affected by Pompe disease are facing even greater financial burdens. Lifesaving enzyme replacement therapies, physical therapy sessions, genetic testing, and specialized equipment come with staggering price tags. Many families struggle to afford these essential services, leaving them to make heartbreaking decisions about their care. Your support ensures that families don’t have to face these challenges alone.