Nikita Heuvelman (20) from Zuidwolde has now had two successful operations in America. She suffers from EDS, a rare genetic connective tissue disorder that is not treated in the Netherlands. Crowdfunding has already raised 200,000 euros in our region. But this is still not enough.
Because Nikita developed an intestinal and pancreatic inflammation, she spent 32 days in the hospital in America, not eight days. And because her intestines are not functioning properly, she also receives parenteral nutrition.
“It’s just impossible to keep up with how fast things are going,” says mother Brenda Huisjes from Maryland, where her daughter is being treated.
“It’s very difficult,” she continues emotionally. “You just hope that you get the peace here to have her treated, but nevertheless you have to worry about the money again. I think: it’s just not fair. She needs it and we have to fight so hard to pay for her treatment.”
Nikita’s life has stood still for 6 years now. She is in bed, cannot tolerate light and noise and cannot keep food down. Because her neck is not strong enough, she always wears a brace. She was only diagnosed with EDS last year. Like a dead bird she leaves at the beginning of September with her father, mother and brother for America where she reports to neurosurgeon Fraser Henderson. He has helped 3,000 patients with EDS in the past 14 years.
“Nikita is one of the ten to fifteen percent of the worst patients I’ve experienced here,” he says from America.
In the meantime, her neck has been secured during an operation and she has also had surgery on her spinal cord, which was attached to other structures at the bottom of her back, which prevented her from moving freely.
“She is very weak at the moment and in a lot of pain. And she certainly doesn’t feel well yet. But it’s also all so much at once and Nikita was also very weak of course, so it’s not expected that she will feel well now. already feels good.”
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