"Children of the Moon" in Tunisia and out of the darkness

Khadija Ben Haj Hamida - Tunisia

They live in the dark and fear the sun, the details of their lives are different from the details of the lives of the rest of the people, sheltering at night and darkness and shadows, the moon their sanctuary and the lights of the enemy is not hard on their will. These are the "children of the moon," whose numbers are not large in Tunisia. They are spread over many provinces of the republic. They do not ask society to accept their illness and accept them in the way they are.

Despite the difficulty of the disease, the infected people found strong support from the Association of Assisting the Children of the Moon in Tunisia, which was founded in 2008 at the initiative of a number of parents of these children, along with a number of doctors, where it had a great credit to the definition of their plight and supervision of their supervision and help and help them and defense For their interests.

Who are the children of the moon?
The children of the Moon, whose scientific name is "dermatitis" or "Zeroderma pigmentosum", is a rare genetic disease first discovered in 1870 by Dr. Moritz Kapuzi.

The owner suffers from excessive sensitivity from ultraviolet rays, whether from the sun or certain types of lanterns, where the baby is born healthy without any signs of injury. However, once exposed to the sun, the signs of the disease are reddened with drought. Skin and inability to see light.

And with the continued exposure to the sun, even for a few periods showing other signs, such as white patches and other structures proliferate in areas exposed to ultraviolet radiation, and with the advent of time, "skin cancer," and there is no room to stop the development of the disease only live in a space free of ultraviolet radiation and prevention through wear Clothing, masks and goggles, as well as the use of leather ointments on the whole body or else the fate of the child of the moon deformity and death.

As for the life expectancy of people infected with the disease, it is estimated that it does not exceed 15 years in the absence of prevention and, when available, approaches normal rates.

A glimmer of moonlight
The head of the Society for the Assistance of the Children of the Moon in Tunisia Dr. Mohammed Al-Zaghl said that the association follows 465 cases from different parts of the country, 30% of whom are over 20 years of age.

Al-Zaghl said in an interview with Al Jazeera Net that the association provides the children of the moon with costumes, special masks, sunscreen and dark ribbons to cover windows of their rooms directly exposed to the sun in their homes and to prepare the classrooms in their educational institutions where they learn the necessary supplements until the child finds the moon Appropriate conditions for study, stressing that all these services are provided free of charge.

The Association also helps to educate the parents about this disease, ways to protect it and search for ways to integrate these patients in their community and to take care of their comfort.

According to Mohamed Zaghl, the association closely keep abreast of developments in scientific research in Tunisia and abroad on this disease, especially genetic diseases in general, pointing out that every Tunisian is pregnant between 25 and 30 genes, and that there are 30 thousand children disabled by genetic diseases, This number is increasing to close relatives, which in his opinion should establish a formal program to address genetic diseases and raise awareness about their risks.

Khalid al-Qirbi, a father of two children infected with the disease and one of the founders of the association, said in his speech to Al-Jazeera Net that this community structure would not have been seen without the self-motivation that necessitated the need to find a champion for the rights of the moon's children. To carry out the recreational and reintegration activities of children it has organized, and the role entrusted to it to negotiate with the official bodies of the ministries, the Council of People's Deputies and human rights organizations to raise awareness of the concerns of this group and to ensure the greatest possible gains.

Dreams are stronger than all restrictions
Nadia al-Jerbi is a 28-year-old woman from the town of Buzlafa (north-east). She is currently working as a craftsman in the field of traditional ornaments and natural soap. She was not able to practice her craft until she became acquainted with the society in 2010, From sun protection and from training and training workshops.

With the support of the association, she was able to set up her own workshop. She also enrolled in the music institute, where she studied piano and guitar, and also practiced sports. She told Al Jazeera Net that she was proud to have left the disease behind her and lived her life with determination to excel.

Nadia considers her workshop to be her own world in which she is passionate about acting and playing, and in one corner she has created a small reading library. And continues to attend the annual forum organized by the Assembly, and is keen through its participation to transfer its successful experience in adapting to the disease and coexistence with him.

Kholoud al-Qirbi, 26, from the city of Khneis in the eastern center of the country, told Al-Jazeera Net about her illness. She confirmed that she did not accept him at first and felt weak and weak, but with time she managed to overcome it thanks to her great determination and patience and full family support.

She pointed out that her younger brother Khairuddin is also infected with this disease, which made her strive with all her strength to provide a positive image of him that gives a challenge.

Kholoud spoke about her passion for writing prose thoughts, in addition to drawing on pottery and crystal, where she benefited from the training workshops organized by the association in the field of decoration since 2010, which enabled her to develop her skills.

Kholoud hopes to expand more than her circle of art and literary activity, and publish her prose tracts in a book.