Jane from Naaldwijk after life-saving surgery: ‘I dare to make plans again’

On this sweltering day, Jane is walking the dog in her residential area in Naaldwijk. For fifteen minutes. ‘And I’m still not tired,’ laughs the 21-year-old Naaldwijk. For many people this is the most natural thing in the world. But not for Jane. At least until a few months ago. ‘I was confined to my house, just sat on the couch and always wore sunglasses. Because I couldn’t tolerate light, ‘she says. ‘Small activities, such as a walk or coffee with a friend, were tiring after five minutes. I passed out five times a day. ‘

And if nothing happened, Jane and her sister Rosa – who has the same illness – would have deteriorated even further. Both sisters suffer from Ehlers Danlos syndrome, a life-threatening connective tissue disease. Due to a rare complication, it became difficult for the sisters to carry their heads and their brains became increasingly oppressed. Jane stares ahead: “We could have died in the end.”

Tv-show

The sisters’ only resort was surgery in Barcelona. The only problem was that it came with a hefty price tag: 160,000 euros. ‘The operation was not reimbursed because this is not yet recognized treatment in the Netherlands,’ explains mother Monique. Because it was her only hope to save the lives of her daughters, she started a crowdfunding campaign. ‘In the beginning it went quite well, but after a while it stopped. Only after we get in Linda de Mol’s show came and won a considerable amount of money, and also received national attention, we had the feeling: this is going to be okay. ‘

Monique and her daughters still remember that moment well. ‘We were watching the show and in the meantime I got all donation notifications on my phone. At some point you start counting and then you know: we’re just there, ‘says Monique. ‘We did throw a small party then. So much depended on it, that feeling was impossible to describe. ‘

Secure neck vertebrae

Yet there was still a small hitch for the sisters. “Actually, we were supposed to go in April,” says Monique. ‘But the operation was canceled due to the corona virus, because Barcelona was one of the biggest hot spots in Europe.’ In May the redeeming phone call came after all: on May 18 and 19 they could be operated on. ‘I dropped everything, arranged Airbnb’s, bought airline tickets. From that moment on it was just gone. ‘

It was a major operation that the sisters have to undergo. ‘It took eight hours and after that they had to be kept in a coma for another 24 hours’, Monique recalls. Jane continues: “Our cervical vertebrae are fixed.” She lifts her hair and shows a large scar. “Our brains, which slowly sank in the neck, were also lifted a little bit.” These were very exciting days for Monique. ‘You are just waiting. But the moment they recover and you hear that the operation has been successful, you will be able to take such a load off you. ‘