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8-year-old inspires six-figure fundraiser

By Kris DiLorenzo
TIM LAMORTE/RIVERTOWNS ENTERPRISE

Rafi Kopelan flexes while sitting on her bed.

 

ARDSLEY — Imagine having skin as fragile as a butterfly’s wings, so fragile that scratching it can cause it to blister or rip off. In the U.S. today, one in 20,000 children are known as “butterfly children,” born with a rare genetic disease called epidermolysis bullosa (EB), a connective tissue disorder that prevents collagen from forming. The children’s skin, internal organs, and even their corneas are affected, so that bathing, eating, and even brushing their teeth is painful. They can’t wear clothing that has seams, and their bodies must be bandaged morning and night. The mortality rate is high, and there's no cure.

One little girl, however, is an iron butterfly. Eight-year-old Rafi (Rafaella) Kopelan of Ardsley is living with severe EB, going to school, taking art and music classes (she plays the bells), singing in a school chorus, and participating in a Brownie troop.

The Kopelans moved to Ardsley from Manhattan last summer to be near family. “We used to visit a few times a year to see family, and we loved it,” said Rafi’s mother, Jackie Kopelan. “We loved the people and the community, and we thought it would be a great place for Rafi to grow up.”

Rafi, a third-grader at Concord Road Elementary School, is a heroic example to children and adults alike. Since the age of 5, she’s been speaking about her disease to various groups; she and her mother have been featured in a TV commercial on the Discovery channel; and Rafi has addressed conventions (“standing ovation,” she noted in an interview with the Enterprise) of pharmaceutical companies and bandage manufacturers.

Hundreds of people have participated in Rafi’s Run, a 5K race (for adults) and Fun Run (for children under age 12) in Riverside Park in Manhattan to raise funds for EB research and education. The idea came from mothers at Rafi’s former school in Manhattan, who approached Jackie, an avid runner. Participating children all receive medals, and everyone gets a white T-shirt with “Rafi’s Run” printed in red and black on the front, and on the back the message, “Seam strange? Seams hurt those with EB. I wear this shirt in solidarity.” The shirts are designed with the seams and label outside.

The fifth annual run, which was held last Sunday, March 6, raised close to $100,000 for debra (Dystrophic Epidermolysis Bullosa Research Association of America). Rafi’s father, Brett, is its executive director. Debra funds research and provides support services for families coping with EB, such as supplying wound care packages for those who can’t afford them. Many insurance companies won’t pay for bandages, according to Jackie Kopelan, which can bankrupt a family, since bandages can cost $20,000 a year.

Rafi is a mischievous girl. During the mother-and-daughter interview, her mouth smeared with Oreo crumbs, she parroted her mother several times. As Jackie Kopelan started listing her only child’s school subjects, “Math, English…” Rafi interrupted, “Wait! I already know how to speak English.” She took over the list: “Writing, reading comprehension, geography, art, music, science, MakerSpace, recess, and lunch.”

Art is Rafi’s favorite subject. One recent colorful creation was a version of her name in crayon, printed so that it read the same backward and forward. When asked about the idea, she replied, “I just got it.” She also drew her dog, Jake, then painted the drawing. By the end of the interview, she was sitting on the floor drawing with glitter crayons, despite her “mitten deformity,” in which her hands and fingers contract, causing her to lose the use of her hands.

Rafi also suffers from anemia, cardiomyopathy and osteoporosis, and needs blood transfusions every other month. She is fed formula all night through a g-tube into her stomach, needs help going to the bathroom, and in the morning her pajamas may be bloody. Her vision may be normal one day, and poor the next. Her parents can bathe only half her body at once, with hospital antiseptic spray and gauze, and the process is excruciating for Rafi. She weighs 37 pounds, and needs to consume 2,000 calories a day. “That’s a lot of calories,” she remarked. She understands her disease, though. She knows that her body cannot produce the protein called collagen 7. “It’s like glue for your skin,” she explained.

Rafi’s daily routine is exhausting: It takes an hour and a half to get ready for school, and two hours to get ready for bed, because she needs to be bandaged twice daily. “There’s certainly not a lot of time for fun,” Jackie Kopelan commented.

Rafi has a sense of humor, though. As her mother told the story of relocating from Manhattan’s Upper West Side to Ardsley, Rafi contributed commentary, with giggles.

“When you come into a new town,” Jackie Kopelan said, “particularly with a child who has EB, you don’t know what to expect. This is a small town and everybody knows everybody, everybody knows everybody’s name."

“Except us,” Rafi interjected.

Her mother continued, “We’ve gotten nothing but love since day one.”

“Except we haven’t met anyone at day one,” Rafi noted.

“Everybody knows everybody," Kopelan repeated.

“Except us,” Rafi repeated.

She’s also curious. Her father recently went to Washington, D.C., to lobby for funding to find treatments. “He was on Capitol Hill on Tuesday,” Jackie Kopelan said.

“What’s that mean?” Rafi wanted to know.

“He had 12 meetings with 12 senators,” her mother explained.

“So one for each senator,” Rafi stated, then asked, “What’s a senator? Is that a person? That’s funny.”

The Concord Road administration has been supportive. “They make great accommodations at school for her,” Jackie Kopelan said. “We’d never even heard of a visual therapist, and they offered one. She can’t see the board well, so they got her an iPad. They have enlarged math sheets so she can see the numbers. They’ve done everything they possibly could so she could have the best educational experience. And this is a public school!”

The school also helped with recess, one of Rafi’s preferred times of the school day. She enjoys the downtime, even though the risk of her getting jostled or knocked down prevents her from joining her classmates on the playground. “The kids have been so nice,” Kopelan explained. “When all the kids go to recess, a couple of kids always stay back and play with her and do different games, so she has something to do for recess. It’s a sign-up, and apparently the sign-up is booked through June — and there’s a waiting list.”

This year was the first time Rafi’s Run was organized from Ardsley. Parents, teachers and friends formed the Ardsley All-Stars team to compete. Friends also came from as far away as Boston to participate. The event is publicized through social media and word-of-mouth, and the results are gratifying for the Kopelans. “It gives me hope for humanity,” Jackie Kopelan said.

Rafi’s personal message to supporters is simple: “I just tell them who I am, and that it’s not contagious. You can kiss me and hug me, but you just have to be gentle. Gentle handshakes.”


Read more local coverage of your hometown in this week’s issue of the Rivertowns Enterprise. Newsstand copies are available at several locations listed above, or subscribe today for convenient home delivery.


 

MARCH 11, 2016

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