Elodie’s parents say doctors noticed something was wrong with their daughter as soon as she was born. “She was bleeding from the mouth when she was born and she had a cut on her leg,” her mom, Emily Kubik told People. “When they gave her a bath, some of her skin came off on her ankle.”
Only a little while after her traumatic birth, doctors diagnosed Elodie with a type of epidermolysis bullosa (EB). EB is a rare genetic condition that makes the skin extremely fragile and causes it to wound and blister easily. These blisters and wounds can be caused by something as simple as scratching or rubbing. In addition to appearing on the skin, these injuries can also form inside the body. The condition occurs in one in 50,000 births. ABC News reports that there are about 25,000 to 50,000 people living with EB in the US.
plungeforelodie/Instagram
Emily Kubik told People that she and her husband, David, were devastated to learn that both of them were carriers of the rare genetic disease and had passed it on to their daughter. “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,” she recalled.
Elodie is 20 months old now, and she has to wear bandages on her core area, her hands, and on her feet, all day and night, to keep her from accidentally damaging her skin. Her parents say that her bandages are made out of special, non-abrasive materials because regular bandages “would take her skin off.”
Day-to-day, the little girl looks normal. The only thing that might clue others into her disease are the wounds that sometimes appear on her face and head. “Her skin, it looks completely normal on the parts that don’t have wounds,” Emily told People. “It’s just very fragile, if she rubs on something she’ll take some of her skin off.”
Plunge for Elodie/Facebook
As of now, there is no cure for EB, but the Kubiks have been working overtime to try to find one. The family has developed a close working bond with the EB Research Partnership to help raise money that will go on to fund research, find a cure, and offer treatment to kids and adults with the disease.
Emily’s friends have also banded together to help after learning about Elodie’s condition. Following the lead of the polar plunge and the ice bucket challenge, they started a movement called Plunge for Elodie that encourages people to jump into freezing cold water to raise public awareness and call for donations. Completely grassroots, the movement has drawn the attention of A-list celebrities, like Jessica Biel, who took the plunge about a week ago.
Emily Kubik says that she’s incredibly grateful for everything her friends have done for her daughter and the EB cause as a whole. “The plunge has been amazing," she said. “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.”
While people continue to Plunge for Elodie and an entire community searches for a cure, the Kubiks say they try to give Elodie the most normal childhood experience they can. While she may have limitations, they make it clear that her condition hasn’t dampened her spirit at all. “She is what we see as a really happy child. She brings us so much joy, no different than any other kids,” her mother shared. “Other than the skin disorder, she’s exactly like any other 20-month-old out there.”
