The Naaldwijk sisters Jane and Rosa suffered from a very rare muscle disease a few months ago.
To save their lives, an operation of 160,000 euros is needed. And they eventually get that money together. Thanks to the many donations, the sisters now have their lives back.
On this sweltering day, Jane is walking the dog in her residential area in Naaldwijk. For fifteen minutes. “And I am still not tired”, the 21-year-old Naaldwijk laughs. 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 shackled at home, just sat on the sofa and always wore sunglasses because I couldn’t stand light,” she says. “Small activities like 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 disease – would deteriorate even further. Both sisters suffered from Ehlers Danlos syndrome, a life-threatening connective tissue disease. A rare complication made it difficult for the sisters to carry their heads and their brains were increasingly squeezed. Jane stares ahead: “We could even have died in the end.”
The sisters’ only resort was surgery in Barcelona. The problem was that it came with a hefty price tag of 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 got into Linda de Mol’s show (This Quiz Is For You, ed.) And thus 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 received all donation notifications on my phone. At some point you start counting and then you know: we are just there,” says Monique. “Then we did throw a small party. So much depended on it, that feeling was impossible to describe.”
Secure neck vertebrae
Yet there was still a small hitch for the sisters. “We were actually going to go in April, but the operation was canceled due to the corona virus, because Barcelona was one of the biggest hot spots in Europe,” Monique says. Finally, in May, the redeeming phone call came: on May 18 and 19 they could be operated on. “I let everything fall out of my hands, 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: “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 come around and you hear that the operation has been successful, then such a burden falls off you.”
Jane thought the operation was very difficult. “I had a huge headache, in fact everything was too much. After a few days I was able to sit up straight again. That was a kind of turning point and I got confidence that it would be okay.” Monique also soon saw improvement in her daughters. “Especially in their eyes. That gray, dull look has disappeared. They shine again.”
We are now more than two and a half months further. “It’s going better than I could have hoped”, beams Jane. “I can walk again, even exercise, meet up with friends and cook. Without having everything burned, haha. I can focus on things again. It will take another year before all the results of the operation are visible. But now I am already very happy. Actually I have a normal life again.
But a lot has also changed mentally. “I dare to look to the future again, make plans. And not for the day after tomorrow, but also for six months from now. I even looked at a course.”
The family is still overjoyed that the Netherlands has donated en masse. “Even though people have only given 1 euro”, Jane responds emotionally. “Those people also saved my life.” Monique: “My daughters are healthy again and have a future ahead of them. Ultimately, that is what every parent wants for his or her children.”