Evy feels safe and secure in the CloudCuddle

Evy has been sleeping on holiday in a CloudCuddle for eight years

Evy’s parents, Dianne Willems and Bram Stiel, were among the first users of the CloudCuddle Junior – which at the time was still simply called CloudCuddle. Eight years ago they bought one for their daughter (now 13 years old). The family gets a lot of use out of it during holidays and during sleepovers at grandma and grandpa’s. The only downside is that the mattresses in holiday cottages are not always the right size.

Dianne and Bram have two daughters: Vera and Evy. While the oldest developed very quickly in every way, the parents noticed that Evy was a bit slow at around one and a half years old. She spoke only a few words and she could walk, but only while holding on to a toy cart. At first the parents thought: everyone develops at their own pace. But when Evy turned two, they raised the alarm.

Hypermobility

At the child health clinic they found that Evy was hypermobile and therefore might not be walking properly. With physiotherapy she might learn to walk independently and her world would likely become bigger. When she was 2.5 years old, Evy did indeed walk better and on her own, but her overall development remained behind. Another year later, based on genetic tests, a diagnosis was made: Rett syndrome. This is a condition in which a child’s development suddenly stops and then deteriorates.

Loss of skills

Children with Rett syndrome can experience problems with movement and (learning to) speak. Epilepsy or breathing problems are also common. On average, children with this syndrome lose skills between the ages of six and eighteen months, meaning they lose what they had already learned. With Evy, it became noticeable that she knew fewer words and that her use of her hands decreased. The parents hadn’t noticed this so much at first, because Evy was born healthy after a “normal” pregnancy, but after the diagnosis all the pieces of the puzzle fell into place.

Support and care

Fortunately, Evy is otherwise healthy, which is quite exceptional with this condition. She eats well, never needs to go to the hospital for treatment, and is strong enough to cough independently when she has a cold, for example. Evy needs a lot of support and care. She cannot eat or play independently, she is not toilet trained, she doesn’t talk, needs help with washing and dressing, and she has no sense of danger. Despite this, she is cheerful and loves cuddling.

Camping cot

At home, Evy sleeps safely in a height-adjustable bed. In the first years she slept during holidays in a camping cot, but at some point she became too big for it. After that the parents tried a small tent, but it tipped over with Evy inside. So that wasn’t safe. Dianne no longer remembers where she first saw the CloudCuddle – eight years ago is simply too long ago. But she immediately suspected it would be something for Evy.

Wardrobe and wall

The family applied to the municipality for reimbursement for a CloudCuddle, but this was initially rejected. They were told it was something for the insurer. Unfortunately, the insurer sent the parents back to the municipality. Because a second application to the municipality was phrased differently – “better participation in society” was the decisive argument – the CloudCuddle was reimbursed after all.

Along on holiday

Since then, the bed tent always goes along on holiday. And to grandma and grandpa’s when Evy stays over there. Evy feels safe and secure in the CloudCuddle, her mother says. This way she always has a good place to sleep, wherever she is, and that brings peace of mind. Without the bed tent the family would not be able to go on holiday together to the chalet or the mobile home of their choice. In that sense, the CloudCuddle gives them more freedom of movement.

Own bedroom

On holiday Evy gets her own bedroom. On the one hand because of the noises she can sometimes make at night, and on the other hand to have enough space to set up the bed tent. The mattress is placed on the floor and within a quarter of an hour Evy’s own familiar sleeping place is ready. She likes new things, her mother says. But on holiday the circumstances are different, so the first night she usually sleeps a little less well.

Mattress width

Overall Dianne is very satisfied with using the CloudCuddle. She does find it difficult that not every holiday cottage or chalet has a mattress measuring 90 x 200 centimeters. Sometimes it is too narrow, which means that together with the bed tent it doesn’t work as it should. Although she usually asks about this in advance, especially abroad it sometimes turns out differently than expected. She is happy with how easy the bed tent is to set up, how compact it is, and how convenient it is to take along in a large bag. And also very practical: certain parts can simply go in the washing machine.