The twins can’t stop giggling as their big sister does their makeup for their first YouTube video. “We’re going to start with the base,” explains Nelly Kolestein as she tilts her head back to allow Rosianne to work her magic.
She squirms when the eyeliner is applied. “I’m scared you’re going poke that thing in my eye,” she says, swatting away the pencil. “Relax!” her sister yells impatiently. Nelly and her twin sister, Neev, are giddy with excitement about setting up their YouTube channel and sharing their experiences with the world.
Today, Neev explains, they’re going to a photoshoot to promote their channel – which, like the girls’ Instagram and Facebook pages, will show the twins living their best lives: enjoying themselves at music festivals, going to soccer matches, hanging out at the mall and posing and smiling for the camera.
It’s stuff every 18-year-old enjoys – but Nelly and Neev are no regular teens. Photographs and mirrors are the only way the sisters can see each other’s faces and there’s no such thing as individual selfies for these two.
They were born connected at the back of their heads and a shared artery means separation is impossible. But Nelly and Neev don’t dwell on their limitations. The girls have an infectious love for life and are determined to change the way people view disability. “When we were newborns, everyone thought we were going to die,” Nelly says. “But we’re here now.
We’re 18 years old and we’re standing firm on our four feet.” Craniopagus twins, the official term given to twins attached at the head, are the rarest form of conjoined twins.
“Our bodies are separate, but we’re joined by the head,” Neev says. “Everyone thinks we can read each other’s minds. But we can’t. We have our own thoughts.
It means we can both do our own thing, with you know, walking and talking.” Craniopagus twins occur once in every 2,5 million births – about 50 a year – and of those a mere 15 survive beyond the first month of life.
Doctors didn’t expect Nelly and Neev to survive their birth – and even if they did, they told their parents, they were unlikely to survive to their 10th birthday. Neev and Nelly beat the odds – not only surviving but thriving too.
The twins’ parents, who have shunned the limelight and don’t want to be identified, had no idea their babies were conjoined until their birth.
They were born in Suriname, a small country on the north-eastern coast of South America which was once a Dutch colony.
The family moved to Amsterdam in the Netherlands soon after the girls were born so they could get specialised medical care and to see if doctors could separate them. “It wasn’t great living in Suriname,” says Rosianne (24), who has become the family’s spokesperson.
She works as a caregiver for children with disabilities and has become her twin sisters’ greatest advocate.
“People started distancing themselves from our family because they thought the twins were the result of some kind of voodoo.”
Once the family had settled into their new home and doctors had examined the girls thoroughly, it was determined separation wasn’t possible. As they share a vital artery and blood vessels, forcing them apart would be equal to a death sentence.
Even though the girls had access to advanced care in Amsterdam, growing up in the European city wasn’t easy.
It took them a long time to master the art of walking together, especially in busy environments, and they also faced cruel remarks from strangers. “We didn’t really want to take them out because people can be really mean,” Rosianne says.
“Once we were walking outside and people were asking us questions like, ‘Why didn’t your parents terminate the pregnancy?’ “It was really bad.
People would tell my mother, ‘You’re just keeping them alive for the money’. It was so disrespectful.” Nelly agrees. “We had to be very careful growing up. It was annoying.
You want to get out and do your own thing because with our condition you don’t have time to live for tomorrow.” But Rosianne is incredibly proud of her sisters.
“They weren’t expected to make it to age 10 – now they’re 18 and you have to just think, ‘Wow’.”
To her, the twins are “just my little sisters and that’s how it’s always been”. “They each have their own personality, for sure. They’re very stubborn and you can tell they really want to make their own mark on the world.”
Nelly and Neev’s social-media accounts show the twins meeting Ajax Amsterdam football star Joël Veltman, getting their makeup done and dancing at Beyoncé and Jay-Z’s On the Run II concert at the Amsterdam Arena last year.
Going to Queen Bey’s concert was a birthday gift from their sister and the pair got to enjoy the show from a balcony, away from the jostling masses of the Beyhive.
Footage of the twins at the concert racked up thousands of likes on YouTube, just as they hoped it would. The girls are intent on raising awareness of their condition and to show people they’re much more than their disability.
Rosianne and the girls’ other older siblings, Timothy and Marione, encouraged the twins to take up vlogging to connect with people around the world and spread their message.
“We have our own YouTube channel so people can get to know us, so hopefully people will stop staring and find out we are sweet girls and not just ‘the girls with a disability’,” Nelly says. And it’s working, Neev says.
“It’s fun. You get to meet new people online and it’s nice to know many people don’t just respond negatively.”
Although the twins have beaten the odds by surviving into their late teens, their life expectancy remains uncertain. But they don’t dwell on that.
They continue to concentrate on their studies at school and take life one day at a time. And Rosianne couldn’t be more delighted.
“I’m really proud of them. Really proud,” she says. “They’ve accomplished so much and have grown as people. “At the moment, they’re still in a phase where they have to discover who they are.
We’ll all let them do that at their own pace. I think the future can be positive.” Nelly adds, “Living this way is what we’re used to.
We wouldn’t want to get separated even if it was possible. We wouldn’t do it. “As long as we’re healthy, that’s the most important thing.
