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'Butterfly' Toddler Has One of the Worst Diseases You've Never Heard Of

Photograph by Emily and Dave Kubik

Elodie Kubik is one of 200 babies born in the U.S. each year with epidermolysis bullosa (EB). Called "butterfly children," the children's skins are so fragile that even the slightest touch can harm them.

When Elodie was born in July 2016, her parents, Emily and Dave, noticed she was bleeding from the mouth and had a cut on her leg. Giving her baths would cause some of her skin to fall off. Accidentally rubbing her skin on something could take some of her skin and leave open wounds. Like the thin layers of a butterfly's wings, Elodie's outer layers of her skin are incredibly delicate.

But the butterfly metaphor is also meant to depict the optimism that kids and adults with the genetic disease must have to tackle life and live with EB's many limitations—challenges Elodie's parents are well aware of.

Like the thin layers of a butterfly's wings, Elodie's outer layers of her skin are incredibly delicate.

Emily and Dave, who live in Connecticut, told Mom.me that they have to be very careful about everything that touches the now 20-month-old. For instance, while they can hug and cuddle their toddler, they have to be aware of how they pick her up, as picking her up under her arms could put too much pressure on her skin.

The parents also wrap special bandages around Elodie's hands, feet and core area every morning and night to protect her skin. Handsocks, mittens that are protective and safe for babies with skin conditions, help mitigate nighttime rubbing, which the Kubiks say is one of their biggest challenges. Clothing is carefully chosen—no buttons or zippers down the front, nothing too scratchy or complicated. The parents even make a point of telling people not to buy them clothes because there are just so many factors that need consideration.

Photograph by Emily and Dave Kubik

"My husband and I were both carriers of the mutation that led to this disease and had no idea," Emily told People. "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."

According to the U.S. National Library of Medicine, EB's effects vary widely. Some with EB might not even be aware of their condition, though they might blister more easily than normal. In more serious cases, infants are born with blisters or areas of missing skin, often caused by trauma during birth. Sometimes blisters also appear on mucous membranes, in the moist lining of the mouth and the digestive tract, resulting in scarring that makes it harder to chew and swallow food, which could slow a child's growth. Some patients' scarring is so severe that their fingers and toes will fuse together or they'll lose fingernails and toenails. In the most severe cases, babies die in infancy.

Photograph by Emily and Dave Kubik

Their friends have come together to help start the Plunge for Elodie challenge in hopes that it'll bring awareness to EB. People have plunged into lakes, pools ... any body of water to help get the word out. Actress and mom Jessica Biel also took up the challenge earlier this month.

plungeforelodie

@jessicabiel Thank you so much for supporting #theplungeforelodie and our mission to #healEB! Grateful beyond words. Happiest birthday wishes to you!!🎈

All the money raised through this EB Research Partnership and challenge will fund research for treatments and ideally a cure.

"Life expectancy for someone with Elodie's type of EB is 30 years, so we feel like we have not a moment to lose," Emily and Dave wrote to us in an email. "We also think we are close—science is moving so fast, and the money raised will ensure the researchers can continue to focus on EB."

Currently, EB patients only have wound care treatment and pain management options similar to those given to burn patients. The few organizations dedicated to EB around the world are convinced that curing EB will be possible, including ideas to re-create healthy skin. The Kubiks also believe that the research done to cure EB can also impact the millions living with other rare genetic diseases.

"We believe that our efforts will ultimately help save a lot of lives, and that keeps us moving forward every day," they said. "We have also been so incredibly moved and humbled by the donations we have received. It takes a village to cure a rare disease, and our village is growing."

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