The Children of the Night need your help

The “Children of the Night” is a colloquial name given to children suffering from Xeroderma pigmentosum (XP), a genetic disorder that causes extreme sensitivity to ultraviolet light. When affected individuals are exposed to the sun, their skin undergoes alterations that can quickly develop into cancer. Special equipment has been developed to protect them from UV exposure but it is uncomfortable and very expensive. The association THE Port has a project to help the children afflicted by the disorder and their families and is looking for experts who can contribute.


Visiting the Synchrocyclotron.

Their homes are kept in darkness and they leave them only at nighttime. During the day they can’t go anywhere without a special suit that protects their skin and eyes from the sun’s rays. Mutant genes in their DNA impair their bodies’ capacity to repair and accurately replicate DNA damaged by UV light. This deficiency causes cancers to develop quickly and, in some cases, can result in neurological abnormalities.

In France, the association Les enfants de la lune helps children afflicted with the disorder and their families by participating, among other things, in the design of special equipment to improve their quality of life whilst providing complete UV protection. THE Port, an association that organises workshops, known as “hackathons”, devoted to solving humanitarian issues, is appealing for experts able to contribute to a project involving the design of a mask to be worn by the children when exposed to daylight. Such a mask already exists but it is uncomfortable and very expensive. An improved mask (see box) could significantly improve the children’s quality of life by allowing them to do more of the things other children of their age simply take for granted.

A group of children suffering from XP visited CERN on Friday, accompanied by their brothers and sisters and members of the Organization (see photo). The visit was organised by the Visits Service, in cooperation with the Medical Service. The itinerary was carefully chosen to allow the children to discover CERN without exposing them to ultraviolet rays. Following a session of Drôle de physique, the active learning workshop for young audiences, which offered them an introduction to the Laboratory, the visitors were given a tour of the Synchrocyclotron. 

If you would like to contribute your knowledge and expertise to the project (see box), which might be the subject of the next Hackathon organised by THE Port scheduled for 2 to 4 October, please contact the organisers.

A mask to turn night into day

The association THE Port is looking for experts in several fields, including design, electronics, ventilation, materials and ultraviolet rays, with a view to designing a mask for children suffering from XP.

Help is needed in the design of the following components:

1. a more effective ventilation system to reduce the amount of steam that forms on the screen of the mask, especially in winter, and to improve the children’s breathing,
2. a more ergonomic visor,
3. different sizes of mask, i.e. one size for children and another for adults and teenagers,
4. a technical material for the hood,
5. a battery system indicating the run-time of the ventilation system.


by Antonella Del Rosso