Seattle takes a cold plunge to help kids with 'butterfly-like' skin

On Sunday, a crowd of Seattleites will brave the cold waters of Alki Beach to increase awareness for the group of genetic skin conditions known as epidermolysis bullosa, which cause painful blistering and tearing. The plunge was organized by the nonprofit EB Research Partnership, which aims to raise $80,000 for research that could help cure and improve treatment for the disorders.

8-year-old Patterson McKenzie was diagnosed with epidermolysis bullosa when he was born in 2015. He said taking a cold plunge and having his condition are both pretty painful, and offered some pointers.

“I breathe heavily in through my mouth a little bit before,” he said.

Annie McKenzie, Patterson's mom, added that they also use distraction methods like singing songs that help guide him and other cold-plungers through the shock. Both of them will be at the beach this weekend, with a playlist featuring Willie Nelson, Pearl Jam, and Marvin Gaye, cheering people on.

“The reason we plunge is to be uncomfortable for a minute, to be in solidarity with kids who have EB who are in pain from birth,” said Jill Vedder, chairwoman of EB Research Partnership, in an organizational meeting earlier this year. “So duck poop is nothing.”

Jill Vedder, along with her husband and Pearl Jam frontman Eddie Vedder, founded the organization in 2010.

The annual cold plunge was started in Massachusetts in 2018 by Emily Kubik and her friends and family, two years after her daughter Elodie was diagnosed with a form of epidermolysis bullosa.

“In some of the dark days in the beginning, which I know so many families have gone through, we were struggling to just keep our heads above water trying to understand what we were dealing with,” Kubik said earlier this year.

They wanted to raise awareness and show Elodie that people cared about her with this plunge, Kubik added. There’s also a fundraising component to the tradition.

“I don’t think in that first year we thought we would raise maybe $30,000, honestly,” Kubik said. “So the fact that just a few years later we’ve raised just over $2 million is really incredible.”

That fundraising has had some impact.

In the past year, the U.S. Food and Drug Administration has approved two new therapies that can help speed up recovery after a skin tear or blister related to epidermolysis bullosa . EB Research Partnership helped fund some of that work.

The new therapies aren't a cure — researchers aim to have one by 2030 — but Patterson McKenzie takes one on a weekly basis to help ease the pain. That means rubbing the medicine on the most impacted parts of his body and resting for 24 hours. To make sure the medicine takes full effect, he also gets to sleep in for the first time after years of extensive, routine bandaging.

“This is what it feels like to be normal,” Patterson said.

So far, EB Research Partnership raised half of its $80,000 fundraising goal in Seattle. Cold-plungers will convene near the Alki Beach Bathouse at 10 a.m. on Sunday.