Plungin' and freezin' to bring spotlight on rare disease

mvoorhis@sierrastar.comFebruary 4, 2014 

On a frosty, chilly Saturday morning, the seven stood hand-in-hand, peering downward with determined looks on their faces. Bodies shaking in swimsuits or summer wear, they began the countdown — 10 ... 9 ... 8 .... Waves of water splashed over the sides as together they plunged into the freezing, unheated water.

In a flash, almost as quickly as they had submerged and with bodies now shivering, they jumped out, making a mad dash from the pool to the hot tub. Squeals and screams were replaced with sighs of "ooh" and "aah." It was the first-ever polar plunge held at the Yosemite Lakes Park Clubhouse in Coarsegold.

And these kids were freezin' for a reason.

The event was the fourth in a series of fundraisers coordinated by Minarets High School seniors Destiny Anger, 18, and Erika Ward, 17, in an effort to raise funds and awareness for Helping Orphans Worldwide (HOW), and specifically for children suffering from Epidermolysis Bullosa (EB), a rare and sometimes fatal tissue disease.

"I was researching different orphanages for our Senior Legacy Experience (SLE) because I'm passionate about helping children when I stumbled upon the HOW website," Anger explained. "As soon as I read about the children with EB, I knew I wanted to help them."

The girls put their heads together and came up with a plan. For fundraising, they held two bake sales in front of Vons, as well as a two-week-long penny drop game on campus (where coins and bills up to $20 were given negative or positive values; there were five jars — one for each class and the staff. The point was to wind up with the most positive points at the end. The staff won and they were treated to a morning of coffee and donuts).

To get the word out, Anger and Ward created a video on their laptops, making sure to get the necessary permission to use the information on HOW's website, and released the final product at the beginning of EB Awareness Week, Oct. 25.

The video was posted on Facebook, Minarets principal Michael Niehoff then posted it on the school's Facebook page, and it can now be seen on HOW's Facebook page.

"These two local girls have jump-started their careers," Niehoff said. "It really shows the positive side of social media. This SLE is not only great community service and volunteer work, but these girls now have career contacts — people who can help them, who can mentor them."

"It's who you know, who can help you and connect you to opportunities. And once these students are connected with other people in other places, it's limitless what they can do."

While Anger and Ward were hoping for a better turn-out for the plunge, they were happy that they had collected more money for their cause.

According to the Mayo Clinic and the Dystrophic Epidermolysis Bullosa Research Association of America, there are four main types of EB, and depending on the type, the effects of the disease can be mild, disabling, or life threatening.

"Butterfly Children" is the term often used to describe younger patients because the skin is said to be as fragile as a butterfly's wings — with contact of any kind, the skin can fall off.

Many patients with mild forms of EB require little or no treatment. However, those with severe forms require hours of daily intense care that is usually provided by their families. The care given to these patients is similar to the care provided for burn victims; blisters are wrapped in dressings and the dressings are changed daily.

Because it is a rare genetic disease, EB is not contagious. The disorder occurs in every racial and ethnic group throughout the world and affects both sexes, with an estimated 50 in one million live births diagnosed with the disease.

So far, Anger and Ward have raised an estimated $1,000 total. While they have no set monetary goal, they said they will continue in their goal to raise awareness of the plight of children affected by EB.

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