By Cristina Orsini | 24-01-2017 |
Muafaq has just one wish: his nose. He has not had one since 2012. Back then, his parents had brought him to the hospital to have one ear removed in order to halt the spread of skin cancer. But when he woke up in the operating room in a hospital in Sousse, Tunisia, he found out that his nose was also gone.
Muafaq is 16 years old and he is a “child of the moon”. He is affected by Xeroderma Pigementusum (XP): a rare genetic condition that makes his skin hypersensitive to UV radiation. After exposure to sunlight, or indeed any other source of UV light, the skin normally repairs the damaged cells. However, this normal healing process is absent with skin affected by XP, engendering life-threatening skin cancer. No cure has yet been found. The only means of protection are special creams, protective clothing, and the adaptation of living spaces to be UV-free (e.g. UV filters, UV-free light bulbs, etc.).
In its rarity, XP exists mostly in the MENA region (North Africa and the Middle East) and in Japan. In Tunisia, approximately 1,200 cases have been registered, while many others may remain unrecognised and thus unrecorded. The enormity of this number becomes evident when comparing it to, for example, France, where there are only 70 to 80 cases of XP. And as if nature wanted to bitterly mock humanity, many of the Tunisian cases are concentrated in the desert areas of the Sahara, where sunshine is one of the few things in abundance. One of these places is the region of Medenine, in southern Tunisia, where Muafaq and his family live. Here, intra-family marriages are common, which increases the incidence of genetic conditions such as XP.
Despite this exceptionally high incidence of XP in the regionof Medenine, doctors are not always aware of the existence of the condition. Hence, this is often treated aimlessly as a dermatological issue. Muafaq’s parents, however, recognised the condition since the first days of their son’s life. They knew it far too well, as XP had already taken away their first son. “We have seen our son being eaten little by little by something invisible”, says Muafaq’s mother. What they feel at the thought that the same is going to happen to their second son is unimaginable. It is something that goes beyond fear, as you can only fear what you do not know.
While elsewhere in the world XP children can conduct a semi-normal life, in the region of Medenine scarce economic means and strong conservatism extremely limit life opportunities. For Muafaq’s family, the struggle is on several fronts: funding medical supplies from creams to protective gear, overcoming the unfounded fear of contagion that is often widespread in the community, and surmounting social isolation. For example, in the absence of adequate UV filters and UV-free light bulbs, schools become an highly dangerous environment for XP children, who often drop-out after a few years. Practically imprisoned in their own homes, XP children are also heavily affected at a psychological level. “You cannot forbid children from leaving the house without giving them any alternative, without the possibility to go and distract themselves somewhere else. It is not a matter of a day or a month, but of a whole life,” explains Abdallah Said, president of the Association des Enfants de La Lune de Médenine, an organisation founded to provide support to XP families within their own region.
Muafaq’s parents still have the determination to make their son’s life better. Since a doctor mentioned the possibility of reconstructing Muafaq’s nose through plastic surgery, Muafaq wakes up every day with the same dream: a prosthetic nose. In fact, with his nose he lost self-confidence and the ability to comfortably hang out with his few friends, even for a few hours after the sunset. The loss of his nose added a further layer to his social isolation, a self-imposed but insurmountable one. A new nose may not save his life, but it would allow him to regain inner strength and self-worth.
Installing a prosthetic nose, however, is no easy task. Although prosthetics can now be made through 3D printing, this still requires a lot of money. According to Muafaq’s dad, the best place for this operation would be France, but the cost of travel, accommodation and health care would come to an amount far beyond the family’s economic capacity.
But Muafaq’s family continues to hope. “The day I will take my first step on a plane directed to France to take my son to a new nose it will be aid al-kabir and aid al-saghir (the two main Muslim holidays in a year) at the same time!” says Muafaq’s father. Muafaq’s sisters laugh. Muafaq smiles. His mother gives him a kiss on his trendy trim. In a dimly-lit house in the Tunisian south, a bright light is turned on: it is the warm light of family love.
Read about Thrǣdable’s project in Medenine here.
See photos of Medenine here.
Cristina Orsini is the co-founder and director of Thraedable.