CASABLANCA: Determined for her 7-year-old son to attend school despite a life-threatening sensitivity to sunlight, Nadia El-Rami stuck a deal with the school’s director: Mustapha would be allowed in the classroom, but only if he studies inside a cardboard box.

Mustapha Redouane happily accepted the arrangement. He knew his mother’s idea would silence the school’s worries about his condition, a rare genetic disorder called xeroderma pigmentosum, or XP, which can make sun rays and other sources of ultraviolet light extremely damaging to the skin and eyes. The disorder is more common in North Africa than much of the world.

“I hate the sun anyways. It gives me blisters,” he said, sitting on his mother’s lap, his face covered with the dark brown freckles that the school director considered a distraction to other students.

Now 8, Mustapha has already had 11 operations to remove cancerous growths on his skin.

His family is among thousands around the world struggling with XP, and increasingly sharing advice and seeking new treatments. In Morocco, families are also fighting for recognition, government help — and the simple right to go to school.

The disorder affects about 1 in 10,000 people in North Africa — more than 10 times the rate in Europe and about 100 times the rate in the US, according to Dr. Kenneth Kraemer, who researches XP at the US National Institutes of Health.

Because the disorder is inherited, XP is more common in populations where marriage between relatives is high, Kraemer said. Affected children inherit two copies of a mutated gene, one from each parent. A 2016 Moroccan government study estimates about 15 percent of marriages are between family members.

Living in a country where the sun shines year-round makes them more susceptible to skin cancers that can be caused by the disorder, said Fatima El-Fatouikai, pediatric dermatology specialist at the Ibn Rochd University Hospital in Casablanca.

Without protection, few XP patients in Morocco live beyond their teenage years, El-Fatouikai said. It is particularly challenging in developing countries, where an awareness of the disorder and access to treatments are scarce, and in poor, rural communities where people spend more time outside.

Outside of El-Fatoikai’s office, families coming from all around Morocco sit in a waiting room eager for their names to be called. There is a rumor about a new XP treatment.

The truth is, she says, “We only have prevention as a possible treatment. These children … have to avoid even minimum sun exposure.” The main prevention measures: Avoiding the sun and wearing protective clothing, face shields and sunscreen.

Fatimazehra Belloucy, 25, has dealt with skin cancer and other problems because of XP.

“If only people made it easier. Their words hurt. I feel entirely alienated,” she said, describing how she faces scared looks and hateful comments as she passes by. Her family limits interactions with her, fearful that the disease is contagious.

“No one would take care of me, so I had to do it myself,” said Belloucy, who received her high school diploma and is now enrolled in university. She hopes to land work helping with the disease.

Most Moroccan children with XP do not continue their education. While US schools install window filters for XP pupils and otherwise adapt to their needs, such accommodations are rare in Morocco.

“It hurts me that I have to see little kids suffer because of lack of awareness,” says Habib El-Ghazaoui, who quit his veterinary job and made it his life’s mission to raise awareness and help children with XP after learning that his daughter Fatimazehra had the disorder.

His daughter, now a young adult raising awareness on social media, has had 50 operations for cancerous growths on her tongue, eyelids and elsewhere. She stays indoors and mostly sleeps during the day but, as the sun sets, she goes to parks and cafes, determined to lead a normal life.

Ghazaoui leads the Association for Solidarity with Children of the Moon from his house in the town of Mohammedia. He juggles his time between visiting families, distributing donations of creams and masks, providing the Casablanca hospital with data and pressuring the government to take action.

XP support groups are increasingly sharing advice online. They held an exceptional meeting in London last year to share “hundreds of practical hints” about hoods, window protections or meters to measure light — and even a French-designed face shield with a fan in it, said NIH researcher Deborah Tamura.

The donations from Ghazaoui’s group reach families like those of Said El- Mohamadi, a tailor in the city of Sale, whose 6-year-old daughter has the condition. His family is still debating the topic of school.

“She’s sad, but I can’t risk taking her to school where there isn’t any kind of protection,” he said.

“But she needs an education,” her mother Maria El-Maroufi pleads.

CAIRO: An Egyptian tradition of painting the homes of Hajj pilgrims with religious verses and images continues to withstand the passage of time.

The pilgrimage season sees calligraphers and painters busy sketching the journeys of worshippers on the front walls of houses in villages, towns and cities throughout the country.

Each artist uses their own unique style to portray modes of transport such as camels, planes and ships, holy sites like the Grand Mosque in Makkah, and passages from the Qur’an.

Ahmed Sayed Ahmed, 30, is one of the most well-known calligraphers in the Ghouria area of central Cairo, where he has worked for more than 15 years.

He told Arab News that the decoration process began with painting walls white to create a clean canvas for the artwork which usually included the name, gender and age of the person performing the pilgrimage.

Gamal Al-Arabi, another calligrapher and painter from Cairo, said that the tradition was still popular among Egyptian Muslims. Raised in Abnoub in Assiut governorate, he studied Arabic calligraphy for two years in Cairo and later traveled to Saudi Arabia where he worked as a calligrapher and painter.

He said that the pilgrimage season was one of the most important occasions on a calligrapher’s calendar with Hajj pilgrims hiring them to write and draw on their homes.

“In some desert villages they draw the camel, for example, and pilgrims around the Kaaba or during prayer. Recently, the majority of drawings involve ships and planes, but paintings of the Kaaba and the sacred house of God are fundamental,” Al-Arabi added.

He pointed out that his favorite fonts for Islamic inscriptions were diwan and rekea because they were easy to read.

ON BOARD THE OCEAN VIKING: The Ocean Viking charity ship rescued more than 80 migrants off the coast of Libya on Saturday, according to Doctors without Borders (MSF), which operates the vessel along with the French charity SOS Mediterranee.
The migrants, mainly Sudanese men and adolescents, were picked up after the Ocean Viking rescued 85 people including four children on Friday. The white rubber dinghy was spotted after a plane was seen repeatedly flying over it, MSF mission head Jay Berger said.
European forces regularly patrol the central Mediterranean looking for boats leaving the Libyan coast, particularly during mild weather.
The Ocean Viking sailed toward the area where the plane seemed to be focusing on and found the dinghy, Berger said.
“But the plane never tried to communicate with us,” he added.
Some 170 migrants, all from sub-Saharan Africa, are now on board the Ocean Viking, which left Marseille on Sunday. An AFP journalist is also on board.

Political crisis
Italy’s far-right Interior Minister Matteo Salvini, who has taken a hard line against migrants and this week sparked a political crisis by pulling his support from the country’s governing coalition, has sent a warning to Oslo, where the rescue ship is registered.
“Italy is not legally bound, nor disposed to taken in clandestine, unidentified migrants from on board the Ocean Viking,” he wrote.

He has said the same about more than 100 migrants on Spanish charity Proactiva’s Open Arms ship, which Hollywood star Richard Gere boarded on Friday.
Norway’s minister of justice and immigration, Joran Kallmyr, said on public television that the migrants should be “transported back to Africa, either to Tunisia or Libya.”
“They should not be sent to Europe because then this action will be an extension of the refugee route instead of a rescue operation,” Kallmyr said.
Gere, who boarded the Open Arms on Friday, said he had just arrived from the nearby Italian island of Lampedusa.
“We brought as much water and as much food as we possibly can, for everybody on board,” he said.
“Everyone is doing OK now but they were on two boats on the ocean. One of the boats was turned back by the Libyan navy. We don’t know what happened to them.
“The most important thing for these people here is to be able to get to a free port, to be able to get off the boat, to start a new life for themselves.”
Salvini also commented on the American movie star saying he hopes Gere “gets a bit of a suntan.”

TRIPOLI: Libyans who fled fighting outside Tripoli dream of returning to their homes as they prepare for the Eid Al-Adha festival with heavy hearts, worried they will end up living on the streets.
In early April, Mohamad Kreir and his family fled their home south of Tripoli as fierce clashes flared between rival forces turning the area into a battleground.
Kreir and others like him were moved into hotels paid for by a crisis committee set up by the Tripoli-based UN-recognized Government of National Accord (GNA) to cope with the influx of displaced.
The committee is now asking them to leave the hotels but has given no reason for its decision.
“A few days ago, they tell us we have to leave the hotel. What should I do? Live in the street with my family? I have nowhere to go,” Kreir said. Another man added: “My family and I are at a hotel and I don’t even have a quarter dinar in my pocket.”
They were speaking during a gathering of some 50 displaced people in a gymnasium organized by an NGO in the Libyan capital.
“I realized that the crisis they’re going through is more serious than Eid,” said Entisar Elgleib, head of a Libyan coalition of civil society organizations, who attended the gathering.
Eid Al-Adha is usually a time of festivities, but for many of the displaced families, this year’s holiday will be a frugal one, as many complain of dwindling savings due to ongoing fighting.
Kongoing Kreir recalled how he and his family fled their home near the Al-Toghar Mosque in the Swani district after Libyan eastern commander Khalifa Haftar launched in early April an assault to seize Tripoli from the GNA.
“We left in a rush without taking even the bare minimum,” he said, before the crisis committee set them up in a hotel. In his 50s, Kreir still suffers from the effects of a stroke he had a few years ago and struggles to stay upright.
Fatma Bachir, a married mother of two, lived in Khallet Al-Ferjan in southern Tripoli, one of the first areas where fighting caused residents to flee. An official at the postal service, Bachir has spent all her savings since leaving her home.
“I spent more than 7,000 dinars (around $5,000) — that is all my savings. We have nothing left, my husband and I, so we borrowed money,” she said.
“Since then, we moved from one house to another staying with relatives before going to a hotel for the month of Ramadan.”

This situation is “abnormal and unbearable. We are going to end up in the street, in debt,” according to Bachir.
According to a report released on Friday by the UN refugee agency, fighting on the outskirts of Tripoli has killed 1,093 people, wounded 5,752 and displaced 120,000.
Many families who fled the violence are dissatisfied with the crisis committee’s efforts at support.
But committee member Abdel Barri Chenbar told a news conference last week that since its creation, the crisis committee has “been able to provide some solutions.”
“The GNA has allocated 10 million dinars to refurbish public buildings to house families staying in schools” since April, he said.
But Elgleib said the committee “is not close enough to the people and its response is slow” and called for authorities to meet with the families effected by the fighting.
“A displaced person doesn’t need a liter of oil or a can of tomato paste … but to be listened to,” she said.
With the lack of prospects and money, some say they prefer to return to their homes, even if these areas are still considered dangerous.
“I want to go home even though I fear for my children because of the security situation and the fighting,” Kreir said.

BEIRTU: Clashes between regime loyalists and insurgents in northwest Syria killed 55 combatants on Saturday, as regime forces continued to nibble away at territory held by its opponents, a war monitor said.
Hayat Tahrir Al-Sham (HTS) has since January controlled most of Idlib province as well as parts of neighboring Hama, Aleppo and Latakia provinces. Several other armed opposition groups also operate in the area.
Fighting in various parts of the region on Saturday claimed the lives of 23 pro-regime forces as well as 32 opposition and allied fighters, the Syrian Observatory for Human Rights said. The regime also launched dozens of airstrikes against northern Hama and southern Idlib, the Britain-based monitor added.
The latest violence came as forces loyal to Damascus pushed a days-long advance toward a strip straddling the provinces of Hama and Idlib, it said.
They aim to capture Kafr Zita — one of the largest towns in northern Hama — and the nearby village of Al-Latamneh from opposition fighters, said Observatory head Rami Abdel Rahman.
Both lie on the southern edge of the opposition-run bastion of Idlib, one of the last centers of opposition to Syria’s Bashar Assad after eight years of civil war.

Regime forces have closed in Kfar Zeita and Latamneh over the past week, after capturing a string of nearby towns and villages, the Observatory said. They are also trying to surround the nearby town of Khan Sheikoun in order to wrest it from the opposition, Abdel Rahman said.
The latest advances come after the Syrian regime on Monday scrapped a brief three-day cease-fire for the Idlib region, accusing its opponents of refusing to abide by the truce.
The region was supposed to be protected from a massive regime offensive by a Turkish-Russian buffer-zone deal that was reached in September last year. But it has come under increasing bombardment by Damascus and its backer Moscow since the end of April.