There is nothing wrong with her eyes. But due to a rare nerve disorder, Elize (10) still has poor eyesight. The girl suffers from ADOA, an incurable disease that can lead to blindness and sometimes deafness. By wearing cheerful Christmas sweaters, residents of Westland raise money for scientific research into the disease, which affects 1 in 50.000 people.
“We have known for three years that she has this,” says her father Wouter Jongerius. At the optician it turned out that there was something wrong with her eyes. Tests at the institute for the visually impaired showed that Elize has ADOA. Elize has severely reduced vision. Unfortunately, it is a progressive disease for which there is no medicine. Elise is a smart and cheerful girl who, thanks to adjustments, can fortunately go to regular primary school. She plays handball, where they play with a bright orange ball for more contrast. Elise said it this week: I wouldn't wish this disease on anyone.”
ADOA is a rare disease, although that is a relative term. There are enough patients worldwide to fill the Kuip. “For that reason, the pharmaceutical industry unfortunately does not do research on it. Fortunately, this is done at the university, where they are very grateful for our contributions.”
10 euros for photo
The initiator of the special Christmas campaign is the Westland construction company Jongerius from Kwintsheul, of which Wouter Jongerius is co-owner. The money raised will go to the Cure ADOA Foundation, the foundation that wants to help eradicate this rare optic nerve disease from the world. The construction company calls on residents of the municipality of Westland, but also from outside, to put on a Christmas sweater and take a digital photo of it. For each photo, Jongerius transfers 10 euros to the charity.
The photos are as catchy as they are cheerful. We see roofers at work, at great heights with a crazy Christmas sweater. Carpenters and plumbers have also exchanged their usual outfits for a wild outfit with reindeer and Christmas balls especially for the photo. The management also puts its two cents in. Every day a new photo of Wouter Jongerius appears on social media, dressed in yet another Christmas costume that seems to have escaped from the collection of the party supplies store.
Wouter Jongerius is touched by the great support for the charity he has become closely involved with because of his daughter Elize. The problem with the very rare hereditary eye condition is caused by an energy deficiency in the optic nerve cells, which causes them to break down. ADOA causes poor vision and can lead to blindness. Complaints develop in childhood and cannot be reversed. ADOA can also affect hearing
Carpenter
The Christmas sweaters have become a tradition, says co-owner Remy van Holst. “It started about seven years ago,” he says. That’s when the idea came up to donate ten euros to charity when a carpenter put on a Christmas sweater. Several subcontractors also participated, but it was internal and very small-scale.”
In the first editions, money was transferred to ALS Westland and VEME, a Westland foundation that works on a house for disabled young people in Monster. In recent years, the money has gone to the Cure ADOA Foundation.
“We have supported this cause since it became known that the daughter of co-director Wouter suffers from this disease,” says Van Holst. “We have put our shoulders to the wheel even more. Various business relations have been made enthusiastic and support the campaign. There are also people who donate spontaneously. We hope to break our record. Two years ago we raised 20.000 euros.”
Text: Karel van der Velden
Photo: Thierry Schut
