Kisses For EB

05/28/2026

🦋 PART 2 — Her Early Journey
From birth through her first year, bandage changes were a daily part of life — a full routine of cleaning, protecting, and wrapping her delicate skin. After she turned one, her skin grew just strong enough to move to every other day bandage changes, but the care never stopped.
Every new blister, every wound, every moment of friction meant starting the process again. But Ariella kept going.
She learned to move, explore, and play with EB as her constant companion. Her family learned how to care for her skin, how to prevent injuries when possible, and how to respond when new wounds appeared. It was a steep learning curve — but they met it together.

05/10/2026

05/09/2026

05/07/2026

🦋 PART 1 — Understanding Ariella’s EB
Ariella has Recessive Dystrophic Epidermolysis Bullosa (RDEB), intermediate, a rare genetic condition that affects the way her skin and mucous membranes hold together. In RDEB, the “anchors” that normally keep the layers of skin connected are missing or fragile — so even gentle friction can cause blisters, wounds, or skin loss.
For Ariella, EB showed itself immediately. She was born without big toes on both feet, and the skin on her right leg was raw all the way up to her kneecap. Her skin was so fragile that even the softest touch could cause new wounds. At just six days old, her first blisters had to be popped — the beginning of a lifelong routine of wound care, protection, and constant vigilance.
RDEB is unpredictable. It’s painful. It requires daily care. And yet, even in those early days of trial and error, Ariella showed a strength that would become her signature.

05/05/2026

🦋 What a beautiful day for the Butterfly Trail Run!
We are overflowing with gratitude for every single runner, every dedicated volunteer, and every supporter who helped bring this event to life. The sunshine showed up, the smiles were everywhere, and the trail was filled with so much heart and purpose. 💛🌿

From the first check‑in to the final steps across the finish line, the day was a reminder of what community looks like — people coming together, giving their time, their energy, and their love to support Kisses for EB. Your presence made the day meaningful, joyful, and truly beautiful.

Thank you for showing up, for caring, and for helping us continue this mission. We appreciate you more than words can say.

04/29/2026

The swag bags are packed, the details are falling into place, and this year’s Butterfly Trail Run is shaping up beautifully. We’re almost ready… how about you. Have you registered yet! 🦋🏃‍♀️🏃‍♂️
Let’s make this our biggest year of support for Kisses for EB.
Join us May 2nd for our 10th annual Butterfly Trail Run

04/27/2026

So true

04/25/2026

7 days aways - register now.

04/24/2026

What are you grateful for?

12/04/2025

Come join us at the Pennsylvania Farmshow Complex for a winters weekend of great gifts! We will be here until Sunday! Get your Smelly Jellies and handmade soaps!! Don't forget about the gun raffle!!