Sad messages from Zuidwolde. The health situation of 21-year-old Nikita Heuvelman does not want to improve. She suffers from EDS, a rare genetic connective tissue disorder that is not treated in the Netherlands. Just over a year ago, with the help of a successful crowdfunding campaign, she had two operations in America.
The operations appear to have been successful, but the Ehlers Danlos Syndrome (EDS) has hit back hard and has caused many more complaints. The serious instability in all her joints makes it especially difficult.
The drain placed in her head has also not yet improved the pressure and she will therefore have to be treated again in Belgium soon. In addition, she has serious complaints due to vascular compressions (veins that are pressed closed). This will require a major operation in the future.
Due to all these complaints, Nikita is having a very hard time mentally at the moment, she says. “Tired of life, not sleeping but just falling away, completely exhausted. It feels hopeless, not knowing where to start, whole days and nights in fear. It feels so lonely and unfair. Why? What did I do to deserve this? And no, I I am (I hope) no longer the brave, courageous, strong Nikita”
Mother Brenda Huisjes says: “I hope to be able to give you another update in a while, but for now we need all the energy to get through the days.”