Lamia  history

We are suffering from a rare hereditary chronic disease which It is a difficult to understand and live because it is directly related to the effect of sunlight on our skin.
 

Even we have normal eyes and we are able to see, we are private to see by daylight. Sun light can burn our skin and our ayes. We are condemned to live in the darkness, for this reason we call the "children of the night," I rather prefer the name 'children of the moon. Because I will focus on these low beams of lunar light that give me some hope.

Sometimes, I look at myself in the mirror, and then I look at photo of my childhood. I was a normal beautiful baby and I wonder what it happened? I have undergone a several surgeries, my face has started to become to be disfigured and I do not agree more.

Sometimes I tear, sometimes I laugh. I am sad and my grief is heightened at daybreak.

I remain waked up all the night, and when everybody is a sleeping and silence reigns, I plunged in to anxiety and fear. I shudder to exhaustion and I sleep a few moments to be awakened very early in a terrible shock on the first beams of sunlight attempting to cross the window of my room.
 

Despite my despair, I laugh, I play, I sing, I play music and it seems to me that I'm feeling lucky: my friend is the moon there playing with me, but it very quickly and I plunged back into sadness. My happiness is fleeting; it depends on a few nights of full moon.
 

I disturbed my father, savaged my mother and took everything to my sister. I seem privileged but I am sad. I have exhausted their wealth, their tenderness, their love and I private my sister from their attention.
 

Although my father is a civil servant, he spent all his money to treat me, to protect me and to relieve me. My father and I visited many doctors, even abroad.
 

He procured me special clothing made by NASA and special sun glasses to protect me from the sun.
 

With the support of my uncle, a doctor living in France, my father was able to acquire a UV stop film. In collaboration with my mother, he set the film on all windows of our house and the windows of our car. He also ensured that our house is not equipped with artificial sources of UV by installing certified UV free lamps.

I want to thank my doctor treating from the dermatology department of the hospital Habib Thameur that with a measuring device adapted verified the absence of ultraviolet throughout my life.

Thanks to my father, I have the best care, provided by leading national and international specialists.

I consulted several times in public hospitals, reception is impeccable and the assumption is correct. However, I prefer to be followed in private practice because I do not see other children suffer from this disease, especially those who are disfigured. I'm terrified to see children my age whose nose, lips, cheeks or ears are being eaten by cancer. It's frightening, I prefer to stop their description. Faced with these images, I tremble and I say I'm lucky? I had all the defenses and I feel for a very short time that I am happy, I smiled but suddenly the claws of the anguish I catch up painfully and I wonder what will be my fate? ?
 

My beloved mother takes care of our home, watch it on my protection. It applies rigorous attention and the photo protective creams several times a day on my face and my hands. Then she helps me bring my holding of NASA. «It uses our car photo protected "to take me to school.
Despite the variability of hours of study, it is still there, at the door of the school so that we come home in the famous car protected from Dad.
 

My father sacrifices himself for me, he uses public means of transport to put at my disposal his car.
 

My situation has changed since I was in the secondary school. At the primary school, all children knew me and sympathized with me. The director, is a nice gentleman, he reserved yearly the same room for teaching my class. My father installed the UV stop film on the window panes of this class. My teachers made sure that my office is far from the door. They gave me permission not to leave the room during breaks between the courses with some friends.
 

Today, in the secondary school, I am forced to change the classroom. The school doctor, who sees us once a year, seems to ignore my illness.

At school, I wear my NASA clothes, I look strange. Some students look at me with compassion, others are surprised me or flee for fear of being contaminated.
 

Some see me with an oppressive and strange look, wondering from which planet I arrive?
 

I am a teenager, at an age when all my girlfriends have certain freedoms. They go out and meet each others. They can attend the cultural clubs, Internet clubs while I am a prisoner of my illness, it makes me suffer greatly.
 

Fortunately I am a good student and my averages school results are satisfactory, otherwise, I would crack and have been completely lost.
 

At my age, girls are pretty and are proud to be so. They express their happiness. Faced with these scenes, anger invades me and I want to return home soon, coming back quickly to my room in order to break the mirror at the end, and no longer see my face which I am not so proud.

Every evening, my father returns late and he runs directly to my room to embrace me smiling, in spite of his pain, which he seeks to hide from me.

My father returned late in the evening, he entered my room to kiss me while smiling despite his deep sorrow that he tries vainly to dissimulate.

 
He ensures me that I will be fine and asks me about school. Often he invites me to go out with him: At night, I can go out freely without being forced to wear my NASA’s clothes. Surely I’m not living in another planet; I am a human being like any other and can enjoy these short moments with my father as a normal child.
He sometimes goes out with me to have a walk through the streets of the neighborhood, or to browse the Internet club; I sometimes visit my friends or have some gym courses.

Going back at home worries me again, and I expect my moon, I wonder about my destiny. Thanks to God, I am a good student, but the question which tracked me: and afterwards? What holds the future for me?  Which will be my job? Which will be my fate? How will be my life…?

I am more depressive during the holidays, the days become longer, although I try to sleep, to deal with my friend: ”the book” and I look forward the evening and the return of my father.

My parents are real fighters but I do not find ways to reward them. it can be with my patience, may be with my achievement. Can I make a little joy and happiness?
 

In the last few years, I attended the the moon’s children camp  in France. It was a short but a very wonderful journey. Everything is well organized, the meetings between children of the moon from everywhere, the games, the rides, the music, everything happens at night until dawn. Doctors and  researchers, who can guide and inform our parents, our sick, our protection and new scientists. I wanted to see these camps stand with us.

That God gives us patience and wisdom. May God make helpers more friendly with us and devoted to help all the children of the moon in our dear country, Tunisia? I hope from the bottom of my heart that the moon will not disappear forever.

Children of the moon