That something as simple as this bed tent can make such a big difference.

That something as simple as this bed tent can make such a big difference.

Brigitte van der Heijden is the mother of three children. Her youngest, Felicity (10), was diagnosed a few years ago with the rare genetic condition Schaaf-Yang syndrome. Ever since she was three, sleeping has been a major challenge for Felicity. Recently, she started sleeping in a bed tent from CloudCuddle and it has changed everything. Now, the whole family of four is finally getting the restful sleep every person so desperately needs.

“I never expected something as simple as this bed tent to make such a big difference. Not just for my daughter Felicity, but also for my other two children, aged twenty and fifteen, and for myself,” says Brigitte van der Heijden. At last, they’re all getting enough sleep again after years of extremely short nights: asleep at 1:30 a.m., up again by 6:30.

Not sleeping well

How did it come to this? “We live in a small home, so my three children share one room. Since Felicity was three years old, she hasn’t been sleeping well. She stays awake until 1:30 in the morning, which means none of the four of us gets the rest we need. My son was even sent home from school a few times because he was falling asleep at his desk,” Brigitte explains.

Low muscle tone

Children with Schaaf-Yang syndrome are typically very active and enjoy moving around, but they face several developmental challenges. They often experience developmental delays, have a constant feeling of hunger (which increases the risk of becoming overweight), and have low muscle tone. As a result, it takes them longer as infants to lift their heads, sit up, and eventually learn to walk. They also tend to overextend their joints easily.

Getting out of bed constantly

Due to her restlessness, Felicity hasn’t been able to fall asleep on time since she was three. Her mother tried everything, but Felicity kept getting out of bed — turning the lights on and grabbing toys. Brigitte recalls, “She would say, ‘I’m not tired.’ And I’d reply, ‘But we are.’” It couldn’t go on like that.

As the gap between Felicity and her peers continued to grow, Brigitte, on the advice of a doctor, decided to have a DNA test done. In the second round of testing, it was discovered that Felicity has a genetic defect on chromosome 15.

Mixed emotions

The diagnosis brought mixed emotions for her mother. “On the one hand, it opened the door to getting the support we needed. But at the same time, I was grieving. Felicity will never be independent, she’ll never get married. Even crossing the street is dangerous for her.

She also struggles with a lot of fears. And because she constantly feels hungry, she is overweight and we’ve had to lock all the cupboards that contain food.”

Autistic traits

Felicity begins receiving more support. She is assessed at De Banjaard , where they identify autistic traits — though not a full autism diagnosis. A family support worker from Ipse de Bruggen starts visiting them at home.

“At first, Felicity didn’t accept this unfamiliar woman,” Brigitte explains. “But after a few visits, things started to improve.” The support worker now helps Felicity both at home and at school, three times a week. The structure and the bond they’ve built together bring a sense of calm and stability.

Sticking to Routine

Since December 2020, outpatient family therapy has been provided by Judith Visser. "Judith guides all of us. She tells us how to best handle Felicity’s outbursts, how to use pictograms to communicate with her, and how to establish a routine. In the years before, my daughter would often lose control she would scream and hit. Judith also teaches us that we must stick to our routine and not give in when there is resistance. Things are getting better at home now," says Brigitte.

No Room for a Bed Box

With the diagnosis, Felicity’s incontinence supplies are finally reimbursed. A solution for her poor sleep also comes into view. But because the family lives in a small home, there is no space for the standard solution: a wooden bed box. Through a support group for parents of children with a similar condition, Prader-Willi syndroom, Brigitte learns about the bed tent from CloudCuddle. That seems like something she could try.

WMO Desk at the Municipality

To make the purchase of a CloudCuddle possible, Brigitte applies for reimbursement at the municipality’s WMO desk. Unfortunately, she is refused twice. “I wish municipalities would realize that families like ours, who live in small homes and have no space for a large wooden bed box which is reimbursed would greatly benefit from this compact bed tent*. And that this could be reimbursed instead of a bed box. For us, it’s not a luxury, but a necessity.”

Reimbursement Through a Fund

With the help of a family therapist from the care organization  Ipse de Bruggen, Judith Visser, they eventually succeed in getting the CloudCuddle reimbursed. The family therapist applies to a fund for this purpose. Felicity is now ten years old. Brigitte tries out the CloudCuddle for a week before deciding to purchase it. The CloudCuddle fits perfectly under her son’s loft bed. “Setting up the bed tent is super simple. My oldest daughter knew exactly how to do it,” she says.

Going to Bed Earlier

“The first few nights, Felicity didn’t like the bed tent. She screamed her head off and thought it was unfair that she had to sleep in it. But by day four, she had accepted it. Since then, she sleeps from 9:30 PM to 6:30 AM. It’s miraculous. Suddenly, it’s quiet at night,” says Brigitte. “I’m so happy about this.” The other children now also go to bed earlier to make up for the sleep they missed over the past years. I finally have time in the evenings to do something for myself. Watch a movie or something.”

Trying Out the Bed Tent

“I recommend other parents in a similar situation to try out the bed tent. Especially if you live in a small space, like we do. It’s worth trying, and the CloudCuddle really makes a difference for us. Felicity is easier to manage in the mornings because she wakes up well rested. I hope municipalities realize how much of a difference something like this can make for an entire family! There must be hundreds of families in the Netherlands like ours.”

Frequent Hospital Visits

Brigitte went through a long process before the diagnosis of Schaaf-Yang syndrome was made. She herself quickly suspected something was wrong. “From the birth of my youngest daughter, I noticed that something was different about her face. Her eyes are slightly further apart, her ears are set a bit lower, and her weight was significantly lower than that of my two other children. At the hospital, everyone told me not to worry. But during the first years of her life, I often took Felicity to the doctor. She regularly had pneumonia or ear infections. Each time, she was given antibiotics. The doctor thought Felicity was simply very prone to these infections,” says Brigitte.

Just a Little Lazy

But Brigitte remains worried. Her little daughter is barely walking or talking at age four. When Felicity starts first grade at primary school, Brigitte notices how big the difference is compared to the other children in the class. “My daughter said ‘c’ when she meant ‘toilet,’ and she hardly walked either.” Care providers think Felicity is slow in her development and that it will be fine eventually. Maybe Felicity is just a little lazy? And maybe she eats too much? She’s so chubby. Not easy messages for her mother, who doesn’t even give Felicity sweets.

DNA Test and Diagnosis

Brigitte wasn’t convinced and arranged for Kentalis to conduct tests on her daughter’s hearing, comprehension, and vision. No abnormalities were found, except for some autistic traits. She also independently enlisted a speech therapist and a physiotherapist to help with speaking and walking. Still, it wasn’t until Felicity was seven years old that she received a diagnosis of the hereditary condition Schaaf-Yang through a DNA test at De Banjaard. Then everything fell into place.

Adjusting to a New Sleep Routine

Family counselor Judith continues:
“As a caregiver, I am very satisfied with the process and flexibility of CloudCuddle during the purchase. This allowed a seamless transition from the loaned bed to the final new bed. Because of this, Felicity was able to continue adjusting to her new sleep routine without any setbacks in her behavior. And of course, as a caregiver, I am very grateful that we at Ipse de Bruggen found a fund willing to cover the cost of the bed. It’s always rewarding as a caregiver to have options to actually solve something for a family. And I was happy to go the extra mile together with CloudCuddle.”