6-Year-Old Enjoys Fundraiser for Her Rare Disease: I Wore 'a Unicorn Onesie and Butterfly Wings!'

The "Plunge for Elodie" raises awareness and funds for critical research to treat and cure Epidermolysis Bullosa (EB)

Born with Recessive Dystrophic Epidermolysis Bullosa (EB), 6-year-old Elodie Kubik does not let the disease stop her from having fun. "I like playing with my friends," Elodie says. She adds, "We play kitchen and dress up. No one stares at me."

Like all children with EB, Elodie has very fragile skin due to the lack of a critical protein that binds the layers of the skin together. Internal and external wounds, as well as severe pain, are frequent occurrences. "I have to be careful," Elodie says. She tells PEOPLE, "I have to be gentle."

When Elodie was diagnosed with EB as an infant, her parents were shocked. "It's such a rare disease. We hadn't really heard of it," Elodie's mother Emily says.

"My close group of women who I went to high school with wanted to do something. And I really felt like, at that point, the thing that I most wanted was to cure this disease. So they said, 'We will help you do that' and came up with the idea for the plunge as a way to have a fundraiser that was super family friendly."

Emily says the way the Plunge for Elodie has grown is unbelievable. "Our goal the first year we thought maybe we'll raise like $15,000, and here we are in year six about to hit the $2 million mark and it's just unbelievable. It's unbelievable," Emily says.

The Plunge for Elodie takes place in numerous cities across the country each spring, with thousands of people taking a leap to support the 6-year-old and the fight for a cure. "I like how people go in the water to make money," Elodie says about the plunge. Dressing up for the event, Elodie tells PEOPLE that for the Wellesley, Massachusetts, plunge she wore "a unicorn onesie and butterfly wings!"

"We also got all the kids in her class butterfly wings for the Greenwich Plunge," Emily says. Elodie adds, "Because butterfly wings are gentle and this is a gentle disease."

Emily says, "I feel every day just so lucky to be her mom. She is just such a happy girl. She's so smart, and she has this unbelievable imagination, which she and her brother Gus explore regularly."

She continues, "And she just has this way about her that people just love to talk to her and be around her. And when I look at the list of people who are coming for our Plunge and all the people in the school that are signed up, it's really … there's no other way to interpret it than these are the people who Elodie has touched by her sweet nature, and by how kind she is and how smart she is, and we just are so lucky to be part of a community that wants to rally around us like this."

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