Since graduating from Wellesley High School in 1999, a tight-knit group of 11 friends has supported one another’s new jobs, expanding families, and moves to other towns and states.
The women are now rallying around Emily (St. Thomas) Kubik’s daughter, Elodie, who was diagnosed with recessive dystrophic epidermolysis bullosa shortly after her birth on July 15, 2016.
The genetic disorder is characterized by a missing protein that is critical in binding the layers of the skin. There is currently no treatment or cure, and management involves frequent wrapping of blisters and skin tears with special bandages that don’t adhere to the skin. In many cases, the disease leads to an aggressive form of skin cancer.
Kristan Fletcher Khtikian, a Hingham resident who grew up across the street from Kubik, said the group is inspired by Kubik’s positive attitude and determination to help families facing similar struggles.
“It’s really incredible to see a mother’s love turn into action,’’ Khtikian said of Kubik, who now lives in Riverside, Conn. “From day one, Emily and [her husband] Dave have said the way you can help us is by doing something about it.’’
In addition to supporting Kubik’s efforts to raise research funds and awareness, the friends are hosting a Plunge for Elodie featuring a polar plunge, music, and food on Saturday, March 3, from 8:30 to 10 a.m., at the Hingham Bathing Beach.
Proceeds will benefit the EB Research Partnership, a nonprofit organization that is funding research for treatments and ultimately a cure. To date, 407 donors have raised $85,415 of the $100,000 goal on Crowdrise.com.
Despite her challenges, Elodie remains a happy, well-adjusted toddler, Kubik says. And with her friends’ support, they know they are not alone.
“I’ll be indebted for the rest of my life for what they’ve done for us over the last year and a half,’’ Kubik said. “I’m not just fighting for my daughter, but for every parent who is told there is no cure for what ails their child. Figuring out how to crack the code to fix these genetic diseases, and save lives and reduce suffering, is what we’re all working for.’’
For more information, visit plungeforelodie.org.
Cindy Cantrell
Cindy Cantrell can be reached at cindycantrell20@gmail.com.
