Parents Aim to Raise Awareness Around Their 'Butterfly' Toddler Elodie's Rare Disease
A "butterfly" toddler from Connecticut named Elodie was diagnosed with epidermolysis bullosa (EB). Now, her parents Emily and David are hoping to spread awareness around the rare disease.
When Elodie Kubik was born in July 2016, she was being washed in the maternity ward by nurses and some of her skin came off. It was then that the baby, who spent the first two weeks of her life in the NICU, was diagnosed at birth with epidermolysis bullosa (EB). Every year, just about 200 babies are diagnosed with EB, which causes the outer layers of skin to be extremely delicate, much like the thin layers of a butterfly's wings—hence the name "butterfly children."
"Elodie was diagnosed at birth with recessive dystrophic epidermolysis bullosa (RDEB) - one of the three EB sub-types," her mother Emily Kubik explains to Parents.com. "RDEB can be one of the more severe versions of the disease. There are very few people living with RDEB older than 30 years old. Though obviously we hope to change that!"
In the short-term, managing Elodie's EB means Emily and her husband David must be particularly careful with how they pick her up and how they hug and cuddle their 20-month old. And in general, EB care usually centers around wound care treatment and pain management options that would typically be given to burn patients. "We struggle with nighttime when the itchiness that results from her disease is at its worse," Emily says. "She often gives herself new wounds over night. We enter her room in the morning with a pit in our stomachs to see what has happened while we slept."
While Elodie's medical challenge can be heartbreaking and difficult for the Kubiks, they are also optimistic. "Elodie continues to do well," Emily shares. "She requires twice-daily bandaging, but other than that she lives a mostly normal life. She will enroll in pre-school next fall, exactly as planned."
They're also extremely grateful for the support they've received. "Our community has rallied in a way that I am not sure either of us thought possible," Emily notes. "Collectively, and with EB Research Partnerships' support, we have raised a tremendous amount of money for research. This is an exciting time in science right now, with many potential therapies on the horizon. We are extremely hopeful for Elodie and other families like her, which motivates us every day to keep fighting."
In fact, the Kubiks' friends started a campaign called the "Plunge for Elodie" challenge, which aims to raise awareness around EB. Like other campaigns that have hit social media in the past (remember the ALS Ice Bucket Challenge?), people are plunging into pools, lakes, you name it to get the word out about Elodie and other kids facing this diagnosis. Jessica Biel even joined in earlier this month.
With hope, Elodie's moving story will not only spread the word about EB but promote further research and medical advancement that will benefit all butterfly children.