The children of the moon

The sun is their worst enemy. With Xeroderma Pigmentosum, a rare genetic disease, they must flee all contact with UV. On pain of leaving there life

Outside, it's pouring rain. An oily and warm summer rain that pours an orange sky, and that could be described as tropical if one was not in the middle of August in Montluel, small village in the Auvergne-Rhône-Alpes region . It is 19 hours, the day goes down, but, despite the clouds, the dosimeter still displays a high UV index. Noah, who spent the day in the shade, under light-emitting diode lamps, adjusts his helmet. After six years of practice, the girl does not always arrive at the first time. His glasses hit the anti-UV window that protects his face, while his arms squirm behind his neck. An adult offers help. The kid of 10 years declines politely: "Thank you, it's just my thing that was slightly wrong. It is all good ! The "thing" in question is this helmet that would not be disowned by an astronaut, with a bubble-shaped visor over a fan and, at the back of the neck, a slot for two batteries. Noah is still wearing two layers of clothing and gloves. All well adjusted. Protected by this funny costume, she could go running outside in the rain. She prefers to sit cross-legged and extend her hands wrapped up to the sky.

Amine was always sick. His eyes, swollen by repeated conjunctivitis, blushed at the slightest ray of sunshine

Noah is a "child of the moon", a sweet name for children with xeroderma pigmentosum (XP), an orphan disease that deprives its victims of contact with ultraviolet light. Amine is one too. Beside Noah, he twirls and laughs behind his bubble helmet. Despite the fan moored to his hood, the boy tries to get some air in by lifting his mask to the side. A reflex gesture, in principle forbidden. "You have to watch him," says Hamid, his father. Amine sometimes forgets that the sun burns. Amine is only 9 years old, but the age of carelessness has already passed for him, as for nineteen children in this special holiday camp, organized by the association Les Enfants de la Lune * . Amine was 4 years old when she was diagnosed with the disease. "We can say" only "or" already "4 years, as many years of exposure to light and consultations among pediatricians and helpless dermatos, explains his father. Amine was always sick. His eyes, swollen with repeated conjunctivitis, blushed at the slightest ray of sunlight, and his face was riddled with freckles. The doctors were just telling us to put sunscreen and glasses on her. Until this day of May 2014 where a doctor of the Necker Hospital poses the terrible diagnosis: "Your child must not see the light anymore. "

Free from any obstacle, Ana, 3 years, discovers the geese of the educational farm of Bonnefamille (Isère).
Free from any hindrance, Ana, 3, discovers the geese of the educational farm of Bonnefamille (Isère) © Alvaro Canovas / Paris Match

The shock is brutal. Every family remembers the moment when they find themselves at the end of the hospital, stunned, provided with a banal sunscreen and some advice with, suddenly obstructing the view of the future, a huge challenge: tame a life where now, it will be necessary to wait for the night so that his child can access without protection to the simplest pleasures, like running in a garden. It is not only the sun that should be avoided, but any source of light producing UV, including artificial lights. The same day, you have to cover the windows of the car, change the domestic lighting, buy filters, LED bulbs, blackout curtains. And, above all, reassure the child that has just been deprived of all its bearings. Wafa Chaabi, Noah's mother, is president of the association Les Enfants de la Lune. She knows this feeling of panic and amazement of the early times: "When a diagnosis falls, the association is there to take over. I arrive with complete equipment and my years of experience. Before, families did their own thing. They put ski goggles on their child, sewed a hood around and then covered it with cloth. Others simply closed their shutters and began to live in the dark. Today, we are better run. We teach parents to adapt and to relativize. "In the rural house rented by the department, parents and children XP of France meet during a week at a quirky pace: here, it is the sunset that kicks off the kick-off activities outdoors. Meanwhile, the huge community building has been carefully caulked. Volunteers from the association came a few days earlier with kilos of blackout material, filters, curtains, and several UV dosimeters. Objective: to cover the smallest square centimeter of ultraviolet light, to condemn the parts that can not be protected, to lay on the ground lines that should not be exceeded when the doors are open, to install reminder signs and to tape dozens of garbage bags to the skylights .

In the park of the domain of Saulsaie (Ain), August 9. Children do not have a millimeter of skin discovered. Many wear glasses. The disease causes eye disorders.
In the park of the domain of Saulsaie (Ain), August 9. Children do not have a millimeter of skin discovered. Many wear glasses. The disease causes eye disorders © Alvaro Canovas / Paris Match

Not far from the entrance, Olympe, 10 years, is waiting for the start for the night at the aquatic center. It is soon 19 h 30; outside, it's still a big day. So, before going out, Olympe, already covered from head to toe, calmly puts on her protective suit. Like a shield. It's all about survival, and the little girl knows the procedure perfectly. It was at the initiative of her mother, Emilie Giret, that the famous helmet was created which changed the lives of hundreds of children. In 2011, this teacher in sport management at the University of Poitiers has mobilized teachers and students in medical research on the "sport with disabilities" in order to make a prototype UV and anti-fog, ventilated, impeccable design . "Very little existed to cover our children while on the move, except a white cloth, made by NASA, on which we put a ski mask. They looked like ghosts, it was completely antisocial. The test phase took a long time, and the certification process to European standards lasted three years, "she says. Certified in 2014, the helmet is manufactured in Vienna now it is used worldwide.

We went on holiday in Morocco with filters, projectors and the dosimeter

Outside, the sun heats a little less; the bus will be ready soon. Dosimeter in hand, some parents check inside the vehicle. There is one last problem to solve: the windows are well covered by thick curtains, but a narrow skylight still allows some UV. A garbage bag will do the trick. The aquatic center, it is equipped with large anti-UV windows. A boon for the kids, who will finally be able to work out before the day has totally fallen. The day before, it was not until 21 h 15 to go pony. To play without protection in nature, only moonlight is allowed. There are the Led garlands and the big spots, brought in part by Naima and Lakhdar. Parents of three children, including a small Delia, aged 6 and diagnosed five years ago, they - like many other families - have deployed their imagination and invested all their strength so that their daughter does not miss any sensation. "We went on holiday in Morocco with filters, projectors and the dosimeter, which does not go X-ray during security checks ... It was necessary to anticipate everything, contact the airport security chief, provide a word of the doctor, Naima says. Traveling far is a puzzle, but it was important to us. We wanted to take Delia to the edge of the ocean, on the beach, so that she feels the sensation of the sand under the soles of her feet, that she touches him, that she knows the flavor of salt water. We installed spots and imagined that we were in daylight. At home, it's the same: our garden is sometimes lit up like a football stadium! In the evening, without protection, she can roll in the grass, feel the wind on her cheek, touch the earth, have fun with the ants, breathe the smell of flowers. With the Children of the Moon, the little things in life look like victory.

These helmets do not mask their smiles. Developed by a team from the University of Poitiers, they cost about 1 000 euros each.
These helmets do not mask their smiles. Developed by a team from the University of Poitiers, they cost about 1 000 euros. © Alvaro Canovas / Paris Match

During the colony, workshops are organized with specialized doctors. Alain Taieb, professor of dermatology at the Bordeaux University Hospital, made the trip to meet them. "When children are protected," he says, "we can get closer to a normal life expectancy. But for now, it's incurable. Two brothers, Thomas and Vincent Seris, are the first patients of xeroderma pigmentosum to have been totally protected from UV radiation. Their parents, founders of the Children of the Moon association, refused the fatality of the doctors who, towards the end of the 1990 years, advised them to let them live normally, before an inescapable end towards the age of 10 or 15 years . Thomas and Vincent have today 26. They have succeeded in studying and leading their lives as young men, far from UV. But hindsight is still not enough to fully reassure parents. Little Amine's father confesses his anguish and admits, moved, that it is finally his son himself who sometimes calms his fears. Amine continues to jump in the rain. He is sure: later, he will be an astronaut.
* enfantsdelalune.org.

source: https: //www.parismatch.com/Actu/Societe/Les-enfants-de-la-lune-1643301