The family world has been turned upside down ever since. “You are terribly shocked, you are sad, but you also want to look ahead,” explains Jasmijn’s mother. Every week she has to go to Utrecht, where she receives treatment. Then an operation follows. “Certainly for Jasmijn, because she looks very cool herself,” she continues. “I’ll do this next year,” Jasmine yells at her sister, who climbs over some boulders.
That is perhaps the most annoying thing about being sick. “That I can’t just do things with my sister anymore.” She likes that she can look at the works of art with her whole family tonight. “It’s a bit different than being sick.” Her parents agree with her. “It is also very nice for Myke. It is also difficult for her that her sister is sick,” says their father. “Now it’s just about both of them again.”
no more better
Jayden (10) can emphasize that it is not only a special evening for the sick children, but also for the parents, brothers and sisters. He marvels at the savannah, where every few minutes a story is told with lions, meerkats and fire. “I think it’s really cool,” he laughs. “Also that I can do this with my brother.”
Jayden’s younger brother, Kean (6), has a serious metabolic disease: Sanfilippo syndrome. “We’ve only known that for a year,” says Kean’s mother Hinnie. In Sanfilippo syndrome, children develop quite well in the first few years, but they start to show some delays later in life. “It’s a disease that gets progressively worse and eventually more and more functions of your body fail,” Hinnie explains. Most people with this disease live only about 20 years of age.
Confronting
The family from Veendam was registered for the special edition of China Lights by a friend. “Look, Kean, the show begins,” Jayden exclaims enthusiastically as more and more smoke spreads across the savannah. Kean, who until then has been walking somewhat restlessly through the Rensenpark, watches the show with amazement and open mouth. “Wow, look,” he says with a big smile on his face.
It is also a relief for his parents. “He thinks this is really beautiful,” says his mother. “Although the incentives are sometimes a bit too much, it’s nice to see that he is having so much fun.” Although it’s not even the lights, but especially the slide that the boy is most enthusiastic about.
His father Tommy finds it quite confronting that it is an evening for families with sick children. “On the one hand, it’s nice that you are not being watched, because everyone is more or less in the same boat, but it is also confronting to see all those families here together.”