“If this operation does not go through, we will lose her”, sob Brenda Huisjes from Zuidwolde. “It really breaks you.”
The mother of 20-year-old Nikita is speaking. Her daughter is in bed all day in a dark room and can hardly do anything. Only a very expensive operation in America can save this young woman’s life. The agony started six years ago when Nikita was fourteen.
“On the way on vacation, Nikita had an accident. She suffered a brain contusion and a broken nose. And from then on her life really stood still,” explains mother Brenda.
“She got a headache, couldn’t stand light anymore, she was always very tired and nauseous every day. She got sicker and sicker. Despite the fact that she followed various rehabilitation processes – for example, she was internally in Beetsterzwaag for nine months – and many different treatments Nikita didn’t get any better.”
Because Nikita had also been bitten by a tick several times, mother Brenda, at the end of 2019, thought that Lyme disease was the cause. But despite a successful treatment in Germany, Nikita did not recover from that either.
“She kept weakening. She got more neck complaints and also all kinds of other neurological complaints. The doctor in Germany then advised us to have further investigations into her neck complaints,” Huisjes explains.
After a long medical search, it was discovered in Barcelona that Nikita has a high cervical vertebra instability. The neurosurgeon from America came with the diagnosis that she has two birth defects. It is a connective tissue abnormality (EDS) and in addition, her spinal cord is stuck in her back (TCS).
It means that the joint that connects her skull to her neck is unstable, and the ligaments that normally hold the vertebrae in place are not working or have been stretched. This puts pressure on the brain stem and completely disrupts its autonomic nervous system. The brainstem controls all unconscious functions and processes in the body such as breathing, heartbeat, temperature, circulation, hearing, energy production, digestion, swallowing and chewing, sleep-wake rhythm and metabolism.
(Text continues after the interview with Nikita’s mother and brother)