Les Enfants de la Lune – “the children of the moon”- are children affected by Xeroderma Pigmentosum (XP), a rare genetic condition of hypersensitivity to UV light. This means that any exposure to sunlight or other sources of UV radiation can result in severe sunburns and eye problems, and a very high risk of developing skin and/or eye cancer from an early age. Consequently, XP significantly reduces the life expectancy of those affected by it, depending on the severity of the condition and protection methods.
Scientists have not yet found a cure: children affected by XP need to fully cover up with gloves, hats, special sunglasses and a face shield to be under any source of UV light, including sunlight. It is only under the moonlight that they can freely play outdoors; while their peers are sleeping to prepare for their next day at school.
While the normal incidence of XP is of 1 in 1,000,000 births; it reaches 1 in 100,000 in Japan, North Africa and the Middle East. For example, while in France the number of people affected by XP is estimated between 70 and 80 (of which many are of North African origin), Tunisia counts approximately 1,000 registered cases. Many, however, remain unrecognised and thus undocumented and unprotected. In fact, the rarity of this condition often results in a lack of recognition, which is extremely dangerous as any exposure can irrevocably deteriorate the health of XP children.
In Tunisia, most cases are concentrated in the governorates of Medenine and Kasserine, where the sun shines in all seasons and consanguineous marriages favour the diffusion of XP to future generations. Here, houses tend to have an open air patio that increases the exposure to the blistering sun. This often means that Tunisian XP children lack safety within their own homes. In addition, these regions are often disadvantaged economically and in terms of infrastructure and services, which makes it harder for families to deal with a rare condition that local hospitals struggle to address.
Coupled with the precarious financial situation of many families, the lack of places adapted to the protection needs of XP children prevents most children to leave their homes during the day. For many, going to school often means a long trip under the sun and a day spent in an environment that can be threatening to their health. Hence, after a few years of school XP children often drop out and spend most of their time at home to avoid exposure. The resulting social isolation is further exacerbated by the effect of the condition on the appearance of the children (dark spots, wounds and scars) as well as the common misconception that XP is contagious. Awareness raising, then, is a crucial part of the struggle to enable XP children lead a better life.
Read more about this topic here.
The Association des Enfants de la Lune de Medenine (Children of the Moon Association in Medenine – AELM) was established in 2012 to support XP-children and their families in their struggle to live a normal life. Being located in one of the regions most affected by the condition, AELM aims to accompany its beneficiaries through each step of their lives.
To do so, AELM aims to:
- Provide medical, psychological, and social support;
- Rehabilitate living spaces, including houses, schools, and recreational spaces;
- Accompany children in their life projects;
- Ensure that affected children and families are informed on the condition, protection methods, medical developments, and prevention of new cases within the family;
- Breaking families’ social isolation, by facilitating their reciprocal contact and by supporting them morally and psychologically;
- Advise and help families to benefit from existing social services;
- Provide educational support.
Thrǣdable & Les Enfants de la Lune
In September 2016, Thrǣdable travelled to Medenine, to meet its XP children and to launch its partnership with AELM.
Together, we organised art workshops for XP children in the region of Medenine, making sure that non-XP children were also involved to encourage friendship and solidarity.
Their art creations were showcased in a final exhibition in a public café with a spacious garden in the very centre of Medenine. This was an occasion for AELM to raise awareness about its work, and for XP children to meet with other children after sunset in a safe place and play together. Some of their drawings were also exhibited in the Tunisian capital, during a Thrǣdable exhibition hosted by Ben’s Coffee. This was an occasion to raise awareness about this difficult condition in the first city of Tunisia.
See the photos here!
Where does my money go?
Together with AELM and its very beneficiaries, we identified tangible objectives that can improve the life of XP children in Medenine through the work of the association. The funds raised through the sales of the “children of the moon” line, will thus go towards an educational centre for the children of the moon.
AELM often provides UV filters and other necessary protections to make sure that existing schools are adapted to XP children’s protection needs. However, this strategy is particularly challenging as school children change classrooms during the day and XP children often change schools as new schools are built and others abandoned. Indeed, the daily trip to school is a health risk that many parents do not wish to impose on their children regardless of the educational and social consequences.
To solve these problems in a sustainable manner, AELM envisages the creation of a school specifically tailored for XP children. To ensure exchanges and avoid stigmatisation, the school would be attended by both XP and non-XP children. XP children, however, would have access to a dedicated dormitory, designed with their protection needs in mind. In the weekend, an adapted bus would be available to transport children to their families. These would include XP children from other regions who have no organisational representation. The advantages of such a centre would be innumerable: social isolation would be broken, the educational gap overcome, and medical support would be readily available within the centre itself.
The only real obstacle to the establishment of such a centre – along with the funding – is the potential reluctance of families to send their children away from their homes for the duration of a whole school week. To overcome this obstacle, AELM aims at organising an awareness raising campaign and monthly meetings with families to ensure that their worries are taken into account and the benefits of the centre understood before the creation of the centre. Once the centre will be running, as the positive experiences of a few children will be shared, the number of attendees will be likely to grow!