Our Story

 

 

Princess and the Port was founded in response to a deeply personal experience with rare disease and the realities of long-term pediatric medical care.

 

After our daughters were diagnosed with Pompe disease, their family entered a world defined by weekly enzyme replacement infusions, ongoing physical, occupational, and speech therapies, sleep studies, and frequent specialist appointments. What is occasional for many families became a structured, lifelong medical routine.

 

Infusion days in particular became central to our lives. These multi-hour treatments, delivered through an implanted port, are essential for slowing disease progression and preserving muscle function. However, beyond the clinical necessity, infusion days carry emotional weight — especially for young children.

 

We recognized that while medical teams focus on treatment, families must also manage the psychological and emotional impact of chronic care.

 

Our daughter Abby loved princesses and dresses. Determined to preserve joy and dignity within a clinical setting, Brandi designed an adaptive princess dress that allowed port access during infusions. Instead of hospital gowns, Abby could wear something that made her feel confident, special, and empowered.

 

That single act became the foundation for something greater.

 

Princess and the Port was created to bridge the gap between medical necessity and childhood identity — to ensure that children with ports, diagnoses, and therapy schedules are still seen first as children.

 

The name reflects this mission:

 

“Princess” represents the worth, strength, and individuality of every child facing medical challenges.

“Port” represents the reality of rare disease treatment — the device that delivers life-sustaining therapy and symbolizes resilience.

 

Today, Princess and the Port serves rare disease families by providing:

 

• Infusion day support packages designed to reduce stress and increase comfort

• Community awareness initiatives to improve understanding of rare diseases

• Fundraising efforts that offset financial and emotional burdens

• Strategic partnerships to expand access to supportive resources

 

 

Rare disease families often face isolation, financial strain, and complex care coordination. Princess and the Port exists to provide practical support while preserving dignity and hope.

 

Our mission is clear:

No rare disease family should walk their journey alone.