The NIK was our last hope and they more than lived up to that.

"We had Kess's care well taken care of until she was 18, but when she turned 18, everything changed," says mother Suzanne. New regulations, a personal budget (PGB) application, adult home care—it all had to be arranged simultaneously, and she was busy with it. And just then, in the run-up to her 18th birthday, a crisis arose: Suzanne had to undergo major surgery. "I was about to have the surgery, and the pediatric home care said: we can't do anything, we're fully booked." It was Anneloes from the NIK who intervened. "It was arranged the day before I was admitted. A huge burden was lifted from my shoulders. Wow, my child is being cared for. I can go to the hospital with peace of mind."

A life turned upside down

Kess was thirteen when her life abruptly changed. A massive spinal cord hemorrhage, caused by a spinal dural arteriovenous fistula, resulted in a high spinal cord injury. She is paralyzed from the chest down and requires daily assistance with standing, caregiving, and catheterization.

"For us, this is our life, and we live with it," says Suzanne. With the support of her husband and son, she takes on many caregiving responsibilities, while Kess ambitiously pursues her education, interns, and thinks about the future. Their common sense, humor, and resilience keep them going, even when things get complicated. Suzanne and Kess are a close-knit team, and others have noticed. Suzanne:

We're often told what a beautiful couple we are, and we're incredibly proud of that.

From smoothly arranged to everything upside down

Until she turned 18, everything went smoothly. Childcare workers came to the school as usual and helped Kess with catheterizations between classes. "My classmates didn't notice, and that was nice. I just want to participate and be like everyone else," Kess says. Financially, things also seemed reasonably well-organized, though it never really ran smoothly. Suzanne: "I received extra child benefit to cover the costs, but there was no regular personal budget (PGB); sometimes we got two hours a day, but that stopped. But all in all, we managed just fine."

In the run-up to Kess's 18th birthday, everything changed and it all had to be arranged at once.

"The day you turn 18, it's a completely different world. It felt like you had to start all over again, and that's when things got really complicated."

Suzanne explains. And it was precisely during that period that another personal crisis arose: she herself had to undergo major surgery. "What would happen to Kess if I couldn't help her at home? The childcare center couldn't do anything for us; they were fully booked. I tried everything myself: through my GP, agencies, and the childcare center, but I was stuck everywhere." Eventually, the childcare center referred her to the NIK (National Institute for Family Medicine), and NIK coordinator Anneloes came into the picture. "I don't know how, but somehow she managed it. The day before my admission, I was told it was all arranged. Kess was being cared for; I could go to the hospital!"

The NIK: our guide through a maze of rules

The NIK's support went beyond simply arranging home care during Suzanne's surgery. They organized a digital multidisciplinary meeting (MDO) bringing together everyone involved with Kess: pediatric home care, adult home care, and the family doctor. Agreements were made there about how care would be provided after she turned 18. Suzanne and Kess were involved in every aspect. "We were able to participate in discussions and were taken seriously," says Suzanne. "That included Kess, which was important to her. Because when you're just 18, you want to be heard. After all, it's about your body and your life."

Anneloes also helped me reapply for the Personal Budget (PGB) under the Health Insurance Act. "She explained the new PGB rules to me, what was and wasn't possible, and explained to Kess how she had to maintain and manage the PGB herself from her 18th birthday," Susanne says. But it wasn't just about practical matters: Anneloes was also a pillar of support emotionally.

"She's the only one who ever asked, 'How are you doing? How are you as a family?'"

The NIK brought peace to our chaos!

The NIK came to us at a time when I couldn't see the forest for the trees. "I was faced with so many complicated rules, assessments, and rejections that I was truly desperate and thought: how am I ever going to manage this?" NIK coordinator Anneloes was our guide through a maze of regulations. She ensured that we, as a family, went from chaos to peace. I had finally found someone who saw and heard us and who could actually do something. The NIK was our last hope, and that hope was not in vain. They more than delivered.

I definitely want to tell parents in similar situations: contact the NIK (Netherlands Institute for Child and Family Studies) in your area. You don't have to do it alone.