Critically ill Nikita in America for first life-saving surgery

Zuidwolde/America – Nikita Heuvelman from Zuidwolde has now undergone the first life-saving surgery on his cervical vertebrae in America with his mother Brenda and his brother Randy. The vertebrae are attached to the plates with overlapping screws through the donor bone. In preparation for this surgery, all sorts of medical tests are currently being done and his head, neck and back are being scanned.

Severe congenital abnormality of connective tissue

The much-needed surgery will be performed on Tuesday, September 20. Nikita has a severe birth defect called Ehlers Danlos syndrome. It is a severe abnormality of the connective tissue, which manifests among others in the cervical vertebrae. As a result, her neck can no longer support her head. The vertebrae pressed against the brain stem, pinching her jugular vein and nerves. Her autonomic nervous system is completely deranged. She has a lot of pain and severe neurological complaints.

The situation is getting worse day by day

Her condition has deteriorated so much that she is practically bedridden. She spends most of the day lying in bed in the dark. She can no longer tolerate light, sound, smell or touch. She has no social life and is completely dependent on her mother for care. “Nikita is turning 20 and now she should be in the prime of her life. She has been since she was 14 years old^e Years of illness. She has been fighting for recovery for a third of her life. She has said many times that she can’t continue to live like this, she doesn’t want to. Loneliness, constant pain and tightness, tremendous pressure on her head, muscle spasms, fainting, almost unable to swallow, but above all the fear of dying, which she could no longer bear. It breaks our hearts to see her suffer like this. This can’t go on any longer,” his mother was very worried.

Unfortunately a second operation was required

After the major surgery on her cervical vertebrae, Nikita had to undergo a second major surgery, namely on her lower back. If possible, the aim is to perform this operation 30 days after the first operation. In this process, the spine is separated from the lower vertebrae. His mother says: “Nikita’s only chance for a dignified life is the next two operations, which will be performed by an American neurosurgeon with extensive knowledge and experience of these conditions. Unfortunately, this is not reimbursed by health insurance in the Netherlands, as there is very little knowledge about these disorders.

The target amount is higher due to additional costs

The target amount of €180,000 was recently reached: a great result! Unfortunately, Nikita has deteriorated rapidly in recent weeks. She can no longer eat, loses weight more often and becomes more sedentary. The treatment, length of stay in the US and what it means after treatment cannot be said now. This and the modified (unfavorable) exchange rate of the past meant that additional costs had to be taken into account. There is a high chance that the target amount will need to be adjusted upwards. So there is an opportunity to donate. If there is money left at the end, this will benefit fellow victims.

So donations are still welcome! More information about Nikita can be found here www.nikitawilweerleven.nl. You will also find the option to donate there.