Emily and David Kukib, of Riverside, Connecticut, knew there was something different about their daughter Elodie the moment they welcomed the little girl in July 2016.
“She was bleeding from the mouth when she was born and she had a cut on her leg,” Emily, 36, tells PEOPLE. “When they gave her a bath, some of her skin came off on her ankle.”
Shortly after, doctors diagnosed Elodie with a type of epidermolysis bullosa (EB), a rare disease that results in fragile skin prone to blistering and minor injuries. In some cases, wounds and blisters can appear inside the body. There is no cure for the condition.
“It was devastating. My husband and I were both carriers of the mutation that led to this disease and had no idea,” the mom of one says. “A lot of our hopes and dreams for our child and how parenthood would be were almost immediately dashed. We had to learn about this illness that we had never heard of. It was confusing and sad and very difficult to come to terms with this diagnosis.”
Now, the parents put “specialized bandages” on the 20-month-old’s feet, hands and core area each morning and night to protect her skin, Emily says. Elodie can’t wear regular bandages because the patches “would take her skin off.”
“Her skin, it looks completely normal on the parts that don’t have wounds,” Emily tells PEOPLE. “It’s just very fragile, if she rubs on something she’ll take some of her skin off.”
So, the Kubiks have set out to find a cure for the illness, teaming up with the EB Research Partnership to raise money to fund the research that will lead to treatment for the condition and ultimately a cure. A group of Emily’s friends have rallied behind the family and started the Plunge for Elodie challenge, to raise awareness about the condition and encourage the public to donate to the cause.
“From the moment we knew Elodie had EB, we asked what we could do to help,” Emily’s longtime friend Kristan Khtikian who began the challenge, tells PEOPLE. “She always said you can help by acting. She and her husband have really been such incredible models of rather than staying in grief mode they’ve decided to work to heal EB and that’s their goal.”
With that, Khtikian wanted to “make a splash” with a special movement, so the group decided on a polar plunge — in which participants jump into chilly water.
“It’s the greatest gift and I’m so grateful to them,” Emily says of the movement. “The plunge has been amazing. This group of women, they’ve been in constant contact since Elodie was born; trying to understand our life better, trying to figure out how they can help. They’ve helped in so may ways. We’ve never had to ask for it, they always just show up and support us.”
Many have taken part of the challenge, jumping into lakes, rivers, and swimming pools to support Elodie and help fund the research. Actress Jessica Biel has even joined in earlier this month in an Instagram video, vowing to donate to the EB Research Partnership.
“When I first saw the video I immediately started crying. I was so flabbergasted,” Emily tells PEOPLE. “She’s incredibly busy and she took the time to do that. We’re optimistic that the word will continue to spread and we’ll be able to fund more research and get a cure even faster.”
As for Elodie, Emily describes the toddler as a “happy, joyful little girl,” noting that the illness hasn’t put a damper on her spirit.
“She is what we see as a really happy child. She brings us so much joy, no different than any other kids,” the doting mom says. “Other than the skin disorder, she’s exactly like any other 20-month-old out there.”