Five teenagers are spending time together around the foosball table. Laughing, chatting, & rolling the handles, enjoying the game. It feels like a neighborhood clubhouse like so many others. Except there's nothing ordinary about this place: we're at Dessine-moi un mouton. The association, founded in 1990, helps children and parents suffering from chronic illnesses - mainly HIV, but also liver disease, diabetes, epilepsy, etc. - and in very precarious situations.

DISCUSSION GROUPS AND A MULTIDISCIPLINARY TEAM

When I arrived, the boys stopped playing their game and joined the girls sitting on the chairs and sofa. All of them agreed to exchange a few words with me as part of the report. I ask them what they like doing at the association. Issa*, an 18-year-old, is the first to jump in. He told me that the discussion groups are important to him and that they help him feel better. He also takes advantage of the washing machine to do a load of laundry.
Earlier, the multi-disciplinary team had explained to me the role of each member of the team and how the place works. Patients benefit from special monitoring. With him, we build a therapeutic education program adapted to his needs," explained Nurse Amine. This can range from day-to-day support - eating lunch together, getting his administrative file in order - to coordinating discussion groups with a psychologist, and health or drama workshops."

THERAPEUTIC TRAVEL SUPPORTED BY DEMAIN

Fatou, reserved and with delicate features, told me in a soft voice that she really enjoyed traveling. Amine also told me about these therapeutic trips for young people aged 14 to 25. The association organizes three of these per year: two for three days, one for a week, in the summer. The last one was in Brest, and the one before that was in Fontainebleau. "We cooked together, visited the forest, and took a carriage ride," Fatou recalls. The destinations change each time. DEMAIN contributes to these trips. In all, 35 young people benefit from the program. "In one week, we do six months' work for the association," marvels the nurse. The objectives vary, but what they all have in common is the desire to take teens out of their everyday lives and broaden their horizons.

Pascal, with his lively eyes and steady voice, finds the educators "too cool" and appreciates the Feldenkrais workshops. "After the session, I'm pain-free," he confided. The Feldenkrais Method aims to reduce pain, injury, and fatigue. Born in the Ukraine at the beginning of the 20th century, it enables people to become aware of their bodies through movement. The state of the body of the people we work with has nothing to do with their age," said practitioner Nathalie. It's a question of adapting to their experience and the context in which they live. When things aren't moving on the inside, it's hard to get things moving in your life." She helps them to refocus, to reinvest their support, guiding them by voice or touch, depending on whether the class is group or individual.

GROUP DYNAMIC

Although initially intimidated, the youngsters eventually all wanted to speak, growing in confidence with every sentence. The team relies heavily on this group dynamic. Being with peers allows them to identify with each other," says Amine. They feel less alone and better understood." Even among themselves, however, they rarely talk about illness. It's still a taboo subject.

I left them to relax together while I continued my visit. The association is located a few meters from the Place de la République, in the 3rd arrondissement of Paris. Behind a glass door opening onto the street, everything has been thought out to make it feel convivial. The space is bright and cheerful. Near the entrance, sofas create an intimate setting. Further on, wooden tables serve as both a meeting and dining room. At the rear of the building are offices and living areas, including a room with table soccer.

A BREATH OF FRESH AIR, AWAY FROM THE HOSPITAL

Nothing here resembles the medical world. "We're outside the walls," sums up Amine. I'm a nurse but don't give injections or wear a white coat. Of the two hundred people the association cares for each year, most arrive on the advice of a hospital. Treatment has already stabilized their health. The association's mission is to provide them with additional educational, nursing, and psychological support.

The team is organized around two pillars - support for young people and care for families - including psychologists, nurses, specialized educators, a Feldenkrais practitioner, and a socio-aesthetician. Many of our activities are designed to help people reconcile with their bodies," explains Élodie. The people who come here have had a complicated and often violent migration history [95% are migrants from sub-Saharan Africa]. They don't allow themselves the rest and relief they need. My role is to offer them a mental break by organizing outings to the spa or podiatry school, for example, to relieve their skin, their feet, their backs."

INTEGRATING ILLNESS INTO YOUR LIFE

Many feel ashamed or guilty about contracting the disease. Sophie, a psychologist, works with them to trace the causes of their traumas. "In many cases, the hardest thing to live with is not the disease itself but the rejection it provokes in the family. In the face of stigmatization, she shows them that they have resources and that it is possible to integrate illness into their life course without preventing them from being who they are.

However, relationships are not always easy. If adolescence is in itself a period of upheaval, in their case, we have to add illness to the list of difficulties, as well as extreme precariousness. We have to help them deal with disillusionment," explains educator Adeline. They arrive in France and are still rejected. It's all about restoring their confidence. Like the aviator to whom the Little Prince asks, "Please draw me a sheep," in Saint-Exupéry's tale, the team helps think of solutions. Each child and each parent takes up the challenge in their own way.

Particular attention is paid to meals. The young people who arrive don't like French food," notes Adeline. On the other hand, they do like a lot of sugar: it's a comfort, they've been deprived, and they don't have any reference points in terms of nutrition. Rebalancing their diet is often very complicated.

Illness raises questions about our relationship with death. Often, when someone finds out they're HIV-positive, they feel like they're going to die," continues Adeline. We tell them that with treatment and a healthy lifestyle, they can lead a normal life. The disease can even become undetectable. It takes three to four years of treatment for the person to become autonomous.

ARMELLE'S EXPERIENCE

My visit ended with Armelle, a 32-year-old Cameroonian who arrived in France in 2015. Having been cared for by the association for three years, she feels strong enough to share her story with me. We separated ourselves in a small, quiet room. She told me that she left Cameroon at the age of 21, having entrusted her one-year-old daughter to a neighbor. A smuggler had promised her Europe, but her journey ended in Libya after four years. There, a lady "handed us over to the men and took the money" supposed to pay for the journey. She lived with two other women in a room and didn't understand what'd happened.

Eventually, a Ghanaian smuggler turned up. She crossed the Mediterranean, became pregnant in an Italian refugee camp, and managed to reach Paris with the help of a Cameroonian woman who put her in touch with a family. Her life in France was far from what she had dreamed of: exploited by the people who took her in, she looked after their children, did housework, and received no care. Her health deteriorated.
A neighbor rescued her: "She passed me on the stairs and asked how I was. I was four months pregnant. I told her I was bleeding, that I was lost. She advised me to get out, take a bus, and ask for Kremlin-Bicêtre. I was taken care of.

She learned that she was HIV positive and almost felt sick. "In Africa, the word we use after that is death. But the doctors reassured me." Her unborn baby was doing well, prenatal care was assured, and she obtained accommodation through the 115. However, accepting HIV treatment takes time. On several occasions, she put up a fight, refused blood tests, and couldn't swallow the pills. The social worker managed to convince her: "She told me to do it for my child and took care of all my appointments.
At Dessine-moi un mouton, two psychologists and a nurse listen, support, and advise her tirelessly. She has obtained her papers. She can consider a job, even if she has to deal with the custody of her daughter, physical pain, and a past that haunts her. She hasn't returned to Cameroon and thinks a lot about her first daughter, who is now ten years old and living with her sister. "I'm tired, but I'm not giving up, never," she tells me with vigor. Who knows where her extraordinary strength will take her?

*All beneficiaries' first names have been changed.