Some family sessions stay with you long after they’re over, and this was one of them.

We met at Virmond Park in Mequon for a beautiful spring evening filled with laughter and three incredible little girls. Looking through these images, you’d see exactly what I saw, a family that loves deeply and cherishes every moment together.

Their youngest daughter, Mackenzie, was born with Epidermolysis Bullosa (EB), a rare genetic disorder that causes the skin to be incredibly fragile. Even gentle friction can lead to painful blisters and wounds, which is why EB is often called “the worst disease you’ve never heard of.”

Despite the challenges EB brings, Mackenzie and her family continue to share their journey with incredible strength and grace, helping raise awareness for a condition that affects so few, yet impacts every part of daily life.

It was truly an honor to spend the evening with them. 

If you’d like to learn more about Mackenzie’s journey or about Epidermolysis Bullosa (EB), I encourage you to follow @mackenzies_eb_journey on Instagram. You can also learn more about the incredible work being done through Fragile Wings Fierce Hearts, the family’s nonprofit organization dedicated to supporting those affected by EB, and EB Research Partnership, which funds research to help find treatments and a cure.

By sharing their story, they’re helping more people understand EB and bringing hope to other families walking a similar path.

Thank you for allowing me to be a small part of your story.