May the CloudCuddle come to the hospital?

When Annemar (7) had to go to the hospital for a stay of several weeks, her parents asked the care staff if the CloudCuddle could come along. That was allowed. This made her hospital bed feel a bit familiar. And safe. “Our eldest daughter struggles with change. She finds it very difficult. In a regular bed, she would hurt herself by bumping into the wall. Or she could just climb out of bed like that,” her father Marijn (35) explains. The mobile bed tent is also a solution for the family of four at other times.

Cheerful girl

At home, Annemar sleeps in a height-adjustable enclosed bed. She was born with the rare Wiedemann-Steiner syndrome (WSS), which causes developmental delays. Marijn: “With Annemar, this results in an intellectual disability and many medical issues. The latter is uncommon in other children with WSS. She receives tube feeding 24/7 and has no control over her gastrointestinal system. She can walk well. And she can talk too, although her younger sister of four has already overtaken her. If Annemar doesn’t feel like doing something, she quickly starts talking about something else.” Marijn laughs knowingly. “Yes, she’s a cheerful girl.”

Lobby

The family first rented a CloudCuddle in 2022 to try it out. “A Deryan travel cot was too small for Annemar. By searching online, we found CloudCuddle. The trial went well. The first time, we went on a week-long holiday in the Netherlands. Shortly after, with the help of the adapted standard letter from CloudCuddle and the advocacy of an occupational therapist, we managed to get the aid reimbursed through the Wmo. The CloudCuddle makes it possible for us to go on outings with the whole family. Especially when Annemar was younger, that was very helpful. It gives her her own place everywhere. During holidays and weekend trips, it is very important for her to sleep in a familiar environment.”

Her own place

Marijn (35) and his wife Rosanne (34) have two daughters, and a third baby is on the way. Benthe (4) is sometimes allowed by her big sister Annemar to play in “her” bed tent, but it must remain clear that it is her space! Marijn: “When I look back at photos of the first time we set up the CloudCuddle in our living room, I can see how enthusiastic Annemar was. You can see how happily she plays in it. Annemar also knows that when she goes somewhere with mom and dad, her tent comes along.”

Respite care

Once every six weeks, the CloudCuddle goes to her grandparents’ house, where Annemar and Benthe stay overnight. “That’s called respite care, I believe? It gives us as parents some time off. Annemar also goes to a respite care home once a month. They have all the facilities there, so the bed tent doesn’t need to come along,” Marijn says.

A bit of a hassle

Marijn is very satisfied with the CloudCuddle as a product. “Easy to set up once you know how. Yes, it’s a bit of a hassle. You do have to bring quite a lot. But it’s great that it exists. I saw that a newer version now has options to guide a medical tube outside. We do that through the zipper.” Marijn has developed his own trick for setting up the bed tent: “I always put the sheet around the mattress first, then turn the mattress a quarter turn so it stands on its side, then I close the clips, lay the mattress flat again, put the legs underneath and then inflate it. Because we regularly need to catheterize Annemar, a bed that is raised off the ground is very practical. A bed in a holiday home almost always fits. Otherwise, we make it fit.”