Big dreams. Brave hearts.
Our small but mighty crew
What started as our story is now a growing movement to lift up kids with EB. Your support helps families manage daily care, find community, and fund the search for a cure.
Together, we can make life a little brighter.
Our Story
Hi, we’re the Patterson crew, aka the McKenzies.
Patterson burst into the world on May 31, 2015, in Bellevue, right outside of Seattle. He arrived by C-section, which at the time felt disappointing, but looking back, probably saved him from a rougher start.
From the beginning, something was different. Patterson was missing skin on his fingers and had small blisters on his feet and knees. The doctors brushed it off as “maybe he was sucking his fingers in utero.” But after a simple heel prick test, another injury appeared. Still, no one had answers.
Soon, nurses were suiting up like they were entering a hazmat zone, notes saying “owies” and “handle gently” appeared on his bassinet, and we were left scared and confused.
Finding a Name for It
We were sent home after a week with vague instructions: “keep an eye on his skin.” We called or visited the pediatrician nearly every day, desperate for answers.
Finally, when Patterson was a month old, we met Virginia Sybert — a pediatric dermatologist and geneticist at University of Washington. She arranged for a biopsy, which was confirmed by Stanford University: Patterson had Recessive Dystrophic Epidermolysis Bullosa (RDEB).
Hearing the diagnosis was devastating. Patterson didn’t look like the severe images you find online, but his skin was fragile and painful every day. We also learned that I carry a known EB gene mutation, and Peter has an undocumented one, creating a faulty version of collagen VII — the protein that holds skin together.
What you don’t see in pictures is what hides under the bandages: the itching, inflammation, and pain. Even when he looks fine on the outside, everything can change in a minute.
- Growing Up with EB -
Those first years were hard. Every new milestone meant new ways to adapt and new worries. We did OT, PT, endless checkups, EB clinic visits at Stanford University… and ran ourselves ragged trying to give Patterson the best care and best life possible.
Now, at 10, we’ve found a rhythm. He’s thriving in music lessons, swimming, Cub Scouts — and yes, even karate (sparring included!).
Patterson is funny, brave, kind, wildly empathetic, and full of personality. He loves Pearl Jam, drawing, Legos, rock band T-shirts, and cracking jokes that make adults do a double-take. He’s also self-aware, adaptable, and wise beyond his years — qualities our whole family has grown into together.
When someone asked how he feels about EB, Patterson said:
“I feel different. Sometimes I feel left out because I know I can’t do things other kids can do.”
Isolation is a big part of EB. There are doctor appointments, bleach baths, and painful bandage changes. Birthday parties and trampoline parks often get skipped. At just 7, Patterson was already weighing if the pain would be worth the fun — and most of the time, he decided yes.
He wakes up every day and doesn’t complain. We give him choices wherever we can: which bandages to change first, what show to watch during changes, and how to protect his skin. It’s our way of giving him a bit of control in a life that doesn’t offer much of it.
Why We Created P4P
There aren’t words big enough to thank everyone who has donated, advocated, and stood by us.
This grassroots project, P4P, was created to support other EB families like ours and to fuel research that gives us hope for a cure in Patterson’s lifetime.
We’re in this for all the kids like Patterson — the ones who deserve to laugh loud, live boldly, and never feel alone in the fight.