Photos of Toddler’s Rare Skin Disorder Show She Becomes 'Covered in Wounds' at the Slightest Touch
A toddler in Connecticut has a rare skin condition that leaves her covered in wounds at just the [...]
A toddler in Connecticut has a rare skin condition that leaves her covered in wounds at just the slightest touch.
Emily and David Kubik knew that something was wrong the moment that they welcomed their daughter, Elodie, into the world in July 2016.
"She was bleeding from the mouth when she was born and she had a cut on her leg," Emily Kubik, 36, told PEOPLE. "When they gave her a bath, some of her skin came off on her ankle."
Shortly after the traumatic birth, doctors diagnosed the infant with a type of epidermolysis bullosa (EB), a rare disease that results in fragile skin prone to blistering and minor injuries. The wounds, which can sometimes appear inside of the body, can be caused by something as simple as scratching or rubbing. There is no cure for epidermolysis bullosa.
"It was devastating. My husband and I were both carriers of the [genetic] mutation that led to this disease and had no idea. 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," Kubik said.
Elodie, who is now 20 months old, has to wear "specialized bandages" on her feet, hands, and core area to protect her skin. Regular bandages, according to her mother, "would take her skin off."
The Kubik's haven't let Elodie's rare skin disorder set them back, though, and they are currently working hard to find a cure. Teaming up with the EB Research Partnership, the Kubik's are helping to raise money that will fund research that will hopefully lead to a treatment for the condition and find a cure.
Emily Kubik's friends have also started the Plunge for Elodie challenge, encouraging people to take a polar plunge into freezing cold water to raise public awareness and money for EB. The challenge has drawn the attention from A-list stars, including Jessica Biel, who took part in the plunge on March 7.
While people take the plunge and continue searching for the cure, the Kubiks are giving Elodie the most normal childhood that they can, saying that the disease hasn't dampened the 20-month-old's spirit.
"She is what we see as a really happy child. She brings us so much joy, no different than any other kids. She is what we see as a really happy child. She brings us so much joy, no different than any other kids," Emily said.