Campaigns to raise money for all expenses will continue in 2023. Almost €300,000 was received in the run-up to Christmas, where an estimated €375,000 was needed. A campaign to get Nikita eligible for KRO/NCRV’s Action Warm Heart has now been launched via Facebook. Through the campaign, ‘good charities and initiatives get attention, and eventually maybe a donation,’ reads the broadcaster’s website. It concerns donations of 10,000, 5,000 or 2,500 euros. Anyone can access Nikita through the website https://kro-ncrv.nl/acties/actie-warm-hart A ‘good cause’.

Many spontaneous actions

For Nikita Heuvelman, all resources are used to cover costs. For example, there are lots of auctions going on and lots of spontaneous activities to raise money. Meanwhile, Nikita and Brenda try to save themselves on the other side of the ocean. At Christmas, Father John and Brother Randy visited for a good week, thanks to a generous donor who paid for the tickets. At the new address, the family received a lot of help from the first residents from the Netherlands.

“Always takes some getting used to, but for now it’s good. We’re in the middle of a shopping center, there’s a supermarket and a pharmacy down the street. I hope Nikita can relax here and give her a chance to browse a store by herself again after years of online shopping.

other peers

Nikita is being treated by Dr. Henderson, who has been writing a book on Ehlers-Danlos Syndrome for years. “The book is almost finished now. Nikita will definitely get a copy, and we will consider how to help him bring this book to the attention of the Netherlands”, says Brenda. “It is important that Dutch doctors also have more knowledge about this seriously complicated disease with life-threatening consequences. Because along with Nikita there are many fellow sufferers in our country who are facing these terrible problems.

Dr. Henderson’s concern for his patient’s fate is evident from the time he brings a Christmas tree with decorations to the new address.

Her biggest fear

A few more things are planned at the hospital: eye tests for high pressure on her brain and a visit to a specialist for her subluxations. “Also, we are still figuring out and discussing where and when to go for treatment for her vascular compression, her stomach issues, and intracranial hypertension (high pressure in her brain),” says Brenda.

Before Christmas, Nikita spoke openly about her biggest fear, which was her biggest wish before the surgery, with Dr. Henderson. Nikita believed that she would be alive again after the operation, which may seem very strange to a healthy person, but for years Nikita had the feeling that her head was not connected to her body. It is very scary, Nikita asked me every day if she is still there. These words hurt me over and over again. Her wish was not yet fulfilled.

Information and Donations: www.nikitawilweerleven.nl