You probably follow some of them on Facebook and perhaps see them in person at a reunion but, by the time you’re in your 30s, your high school buddies are usually not around enough to share the everyday joys, disappointments, and milestones of your life. So how to explain the ongoing connection of 11 women in the Wellesley High School Class of 1999?
Some of it has to do with a little girl called Elodie.
Elodie was born on July 15, 2016, to Dave and Emily (St. Thomas) Kubik, who live in Connecticut and work in New York City. The middle child of five, Emily grew up on Norwich Road in Wellesley, where her parents and a sister still live.
The couple married in 2013. Before they started a family, Emily said, “I had every single genetic test you could run.” But nothing showed up.
Yet at birth at Greenwich Hospital, Elodie was bleeding a little from the mouth, and had a very small cut on her leg. When she was washed off, some of her skin came off too. That was enough to raise the suspicions of the medical personnel at Greenwich Hospital and Elodie was quickly taken on a 45-minute ambulance ride to the neonatal intensive care unit at Yale. “Within 10 days we had genetic confirmation,” said Emily.
It turned out Elodie had a very rare disease called Recessive Dystrophic Epidermolysis Bullosa. EB is actually a name for a group of painful, disfiguring diseases for which there are no approved treatment. Life expectancy is 30 years old. “That’s why we feel a tremendous amount of urgency,” said Emily. “It’s a race against the clock.”
The Wellesley village steps in
Kristan Fletcher Khtikian, who grew up across the street from Emily and was in the same high school class, describes her friend as ” fiercely determined, and alongside her husband Dave, works tirelessly on behalf of EB families to raise money and awareness for the cause.”
But she is aware that it takes a lot to have a major impact on a rare disorder. “And that is why myself and Kate Boardman Hall, another Wellesley native, have joined together and corralled our close-knit group of Wellesley childhood friends (all of us WHS class of ’99 grads, and the majority of us whose parents still live in Wellesley) to raise critical funds that will accelerate progress towards finding new therapies for EB,” she said. Clinical trials are currently under way.
On March 3, the whole group, plus anyone else who signs up at https://www.plungeforelodie.org, will be plunging into the chilly waters off the Hingham Bathing Beach to raise funds for the EB Research Partnership, a nonprofit dedicated to funding EB research. The Hingham event will be the first Boston-area EB fundraiser.
The group will also be together on the weekend of Jan. 20. “It’s a remarkable group of women I happened to find,” said Emily.
Emily says that while Elodie is initially shy when she meets new people, she is a happy child who “gives back of lot of joy,” despite what she must endure.
She is, of course, too young to know anything about EB. “She’s aware that she had to go through annoying bandage changes twice a day,” says Emily. The bandages are much more medically sophisticated than Band-Aids, which would pull Elodie’s very fragile skin off.
But her parents, and the remarkable nanny who cares for her when they are at work, already know what faces them all. They see the wounds and blisters on the toddler’s skin, and suffer along with her. She doesn’t yet understand that she can’t itch herself, so her parents greet each morning with fear, wondering what she might have done to herself during the night.
They must be very careful of what she eats, because she will likely have issues with her esophagus. “It’s a disease that affects everything,” Emily says.
Although the disease is genetic, there had been no outward signs of it in either family. Now every single person in her family is being tested.
That’s knowledge for the future. For now, Emily worries every day what it will be like for Elodie as she gets older and becomes aware that she’s different.
“I hope she finds a group of friends like I had in Wellesley that can help support her.”