A fund-raiser known as Plunge for Elodie has raised over $600,000 for research into a rare and presently incurable skin disease called Epidermolysis bullosa (EB) that notoriously makes children’s skin as thin as a butterfly wing.
Plunge for Elodie was started in March 2018 after Emily St. Thomas Kubik’s infant daughter, Elodie, was diagnosed with a severe skin condition.
Soon after Elodie Kubik was born in July 2016, she was diagnosed with recessive dystrophic epidermolysis bullosa. EB is a family of rare connective tissue disorders that affects one out of every 20,000 births in the United States.
“When we asked Emily very early on how we could help, she said, ‘you can help me by finding a cure for my daughter,'” said St. Thomas Kubik’s friend Kristan Fletcher, who became co-chair of Plunge for Elodie. Fletcher and nine other high school friends quickly got to work.
The weekend of March 7 and 8, hundreds of people attended the third annual Plunge for Elodie around the world, with the main event held at Morses Pond Beach in Wellesley. Plunge events were also held in Old Greenwich, Conn.; San Francisco; Staten Island, N.Y.; and London.
“It’s incredible the response we’ve seen from the community. Everyone from Wellesley High School students and teams to the police department and the fire department [attends]. We have had support from all fronts. It’s really just amazing and humbling,” said Fletcher noting that last year, the fire department broke through the ice at Morses Pond so the plunge could continue.
The Wellesley plunge event was originally canceled this year over concerns about the novel coronavirus, but organizers but decided to go forward with a smaller, more private plunge with family and friends.
For the first plunge event in 2018, the fundraising goal was set at $15,000 which was greatly surpassed when the fund-raiser went viral, garnering support from Jessica Biel and bringing in over $150,000. This year, Plunge for Elodie surpassed the fund-raising goal of $300,000.
All proceeds from the plunge events directly benefit the EB Research Partnership, the largest nonprofit organization dedicated to researching, treating, and curing EB.
“We won’t stop Plunging until Elodie and all those living with EB are cured,” said Fletcher.
People with EB lack the proteins required to bind the two layers of skin together, which leads to tearing, blistering, and shearing off of the skin. This results in severe pain, disfigurement, and permanent scarring. Severe damage can be caused by scratching, rubbing, heat, or even tape.
Regardless, 3-year-old Elodie has been attending preschool.
“For everything that she deals with, she still manages to be a pretty happy child which is fairly awe-inspiring,” said St. Thomas Kubik. “My hope for her is that she has a day in her life where she doesn’t experience pain.”
Life expectancy for sufferers is around 30, as there is currently no cure or treatments beside extensive bandaging and moisturizing wounds and EB greatly increases risk of aggressive skin cancer. St. Thomas Kubik said that Elodie’s skincare routine takes her and her husband approximately half an hour every night including a bath and bandaging.
St. Thomas Kubik said Elodie begs her not to remove the bandages because it causes her immense pain, so her mother tries to turn the process into a game to make it easier on Elodie.
In addition to Elodie, the fund-raiser honored Sophia Ramsey, a 9-month-old who suffers from one of the rarest and most severe forms of the disease. So far in her short life, she has endured several hospitalizations, hours of bandaging and painful wound care, and internal wounds along her digestive tract.
“[Doctors and researchers] believe that a cure is within reach and because it is a rare disease, it’s just a matter of funding so every dollar that we’re raising really helps and will lead to a cure,” said Fletcher. “It’s a really terrible disease but one we believe we can have an impact on and really effect change”
“There’s a lot of reasons to be very hopeful," said St. Thomas Kubik. "We’ve never been closer to breakthroughs.”