Our Story Matters
Who We Are
Princess and the Port began as a fundraiser aimed at creating adaptive clothing. We have reimagined dresses into functional yet captivating garments that cater to the specific needs of children undergoing medical treatments. By incorporating zippers for medical port access, we not only prioritize the dignity and comfort of young patients but also help them maintain a sense of normalcy and joy during difficult times. Inspired by our daughters with Pompe Disease.
As a nonprofit organization, we are now planning to provide wagons, care and activity packages, and host adaptive clothing events throughout the year.
Our Mission
Awareness
Educating Communities
Princess and the Port demonstrates resilience and motives others when confronted with hidden challenges in rare diseases
Through community engagement and informative content about rare diseases, we aim to spread awareness, empower families, and foster understanding within society.
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At Princess and the Port, we are to empowering individuals with rare conditions. Our mission is to provide support, resources, and guidance to help you navigate the challenges of your unique journey. We can foster a community that uplifts and inspires one another, ensuring no one feels alone in their fight. Join us in embracing hope and resilience as we manage our rare conditions together.
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Pompe Disease: Understanding a Rare Genetic Disorder
Currently, there is no cure for Pompe
disease. However, an intravenous
treatment known as Enzyme Replacement
Therapy (ERT) is available, which helps to
slow down the progression of the disease.
Pompe disease is a rare genetic disorder caused by a deficiency in the enzyme alpha-glucosidase (GAA). This deficiency leads to the
accumulation of glycogen within cells, primarily affecting the body’s muscles, heart, and liver.
Our girls receive infusions on a weekly basis. The medication takes approximately 5 to 7
hours to administer, as it must be delivered slowly to ensure better absorption by the body.
Pompe disease results in various symptoms, including:
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Muscle weakness
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Respiratory challenges
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Delays in speech (enlarged tongue)
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Issues with chewing and swallowing
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Damage to organs
Pompe
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Empowering Lives
Making a Difference
