Yesterday at 7:45 PM • Edited yesterday at 8:30 PM
While King’s Day in Bergen op Zoom is usually all about parties, games and music, on Monday afternoon we commemorate 17-year-old Bram de Caluwé. He died on April 13 from the muscle disease SMA (Spinal Muscular Atrophy). During the presentation of the ‘Ribbon for a Child’, his parents received the ribbon posthumously for him: “Despite the loss and sadness you have, we are also standing here with pride.”
There is an exuberant party earlier in the day on the Wilhelminaveld. Children enjoy themselves with games, parents sit at tables in orange clothing and harmony plays on stage. But around the ribbon award ceremony the atmosphere changes briefly. Of the four children who receive a ribbon, Bram is the one who is missed.
Mayor Margo Mulder addresses those present and tells the boy’s special story. “The Ribbon for a Child ceremony is a celebration. Because with this special award we want to put children or young people who do good things for others in the spotlight. So it’s a celebration,” she says. “Yet the ceremony also has a sad side.”
“I am committed to all other children who will get this.”
Ingrid and Rob, Bram’s parents, walk onto the stage and receive the ribbon, visibly moved. “It is special. For the family and for Bram,” says Ingrid. “Despite the loss and sadness you have, we also stand here with pride.” Rob adds: “It’s a bit of a surprise. The loss is very great. But it’s nice that attention is being paid to his illness again in this way.”
Bram is described by his parents as sweet, social and funny, stubborn. “He was very positive. Never grumpy, never jealous and always cheerful, despite his illness,” says Ingrid.
That disease, SMA, is a muscle disease in which muscles continue to deteriorate. “When we were diagnosed with Bram, there was no medicine at all. The expectation was zero,” Ingrid explains. Treatments did come later, but it was too late for Bram. Yet he continued to work for others. “He always said: I am committed to all the other children who will have this.”
“He didn’t want flowers, but donations for Muscles for Muscles.”
He did this for Spieren voor Spieren, among others. As a young boy, he appeared on posters with gymnast Epke Zonderland, participated in campaigns for the Friends Lottery and participated in initiatives such as Serious Request. “He did a lot,” says his father. Even after his death, Bram thought of others. “He didn’t want flowers, but donations for Muscles for Muscles.”
Bram saw that treatments for young children were improving. “He saw children who had been given medication from birth. That development is much better than when he was diagnosed. He stuck to that. For other children.”
“Live and enjoy the little things.”
His parents are now trying to continue that idea. “We try to be positive. That is sometimes difficult,” says Rob. “We have to make something of it. We promised him that.”
Ingrid sticks to the message she also gave during his funeral: “Enjoy the little things. Live and enjoy the little things. And celebrate everything you get.”
