by FRANCINE KRIEGER
This article was published by Global Health Hub on June 25, 2014.
MOROCCO – Mounir Yakdone died at 7 years old in pursuit of an education. His parents warned that the walk to school would continue to kill him, but the one-eyed boy painted with skin tumors felt he had nothing to lose.
Nozha Chkoundi and Mohammed Yakdone had taken their son Mounir to a public hospital in Casablanca when he was 3 years old. They were concerned about the freckles that multiplied on his skin with each passing day.
But being seen at the busy hospital was nearly impossible. They stood in line for hours, with the hot Moroccan sun radiating the heat of their impatience and the skin of their freckled boy. When finally seen by a doctor, Mounir was diagnosed with a fatal skin disease called Xeroderma Pigmentosum, which medical professionals generally shorthand to XP.
XP is a genetic disorder that cannot be detected until after birth, and until an infant’s skin reacts to sun exposure.
So when Nozha and Mohamed were letting Mounir spend three joyous years in the sunshine; shirtless at the beach, and unprotected while playing soccer in the sun, they didn’t know that he had XP and was quickly, certainly acquiring skin cancer.
Worse, it seemed to Nozha and Mohamed that the hospital’s doctors were of little help to their dying boy, and that rather than being treated effectively, Mounir was being used as a teaching tool. Visits frequently entailed Mounir’s being displayed to a class of doctors who did not yet know much about the disease.
Nozha and Mohamed ended the hospital visits. The sun’s damage had been done. Mounir had cancer, and his left eye had been removed.
By the time Mounir turned seven, his days were numbered. Nozha and Mohamed let him choose: Hold onto life living indoors, or finish his life living as he pleased. He chose to continue going to school.
“When Mounir died I burned all of his photos” Nozha said. “I couldn’t bear to look at him.”
Mounir Yakdone, her sweet boy, was what Moroccans call a Child of the Moon.
Today there are 800 Children of the Moon in Morocco. Due to poverty and poor access to health care, most of these children, teenagers and young adults will die before they reach 30.
Xeroderma Pigmentosum, XP, is a rare disease carried in 1 out of every 80 Moroccan’s DNA. It is only passed from parent to child when both parents carry the recessive trait. Thus, in Morocco’s poor communities, where there is little opportunity for marriage outside he family, people are at higher risk to have, or at least pass on, the disease.
The disease is characterized by blistering and burning of the skin and eyes, along with various cancers.
The National Cancer Institute reports a 10,000-fold increased risk of skin cancer for someone with XP and the National Institutes of Health (NIH) has found that non-melanoma skin cancer develops at a median age of nine.
Children of the Moon are also prone to ocular cancer. In many cases they go blind, and like Mounir, have their eyes removed.
After Mounir died in 1996, Nozha vowed never to lose another Child of the Moon to the sun. She opened the Moroccan Association of Solidarity with the Children of the Moon in 2012, in honor of Mounir, and with hope of a longer life for Sanaa, her baby daughter who was also born with XP.
Sanaa is now 24, and has never had a skin tumor, because she spent her first 20 years living in darkness.
“She watched how the disease killed her brother”her father, Mohammed, said. “And it was enough to keep her safe inside.”
Safe inside, but her life of darkness has left her completely alienated.
Sanaa’s only childhood friend stopped visiting because over time, she grew embarrassed by her. Even relatives’ visits were emotional for Sanaa because her family was afraid of damaging her. They sheltered during these visits, alone in a dark room.
“My daughter doesn’t really have a future” Nazha speaks to the floor at her feet. “It hurts me to watch her live in darkness.”
But where there is darkness, light can be found. Sanaa found light through Facebook.
She passed her lonely years with long dark window curtains closed by connecting to others who live with XP in Morocco – making herself a social networker for her mother’s organization.
Since the Association of Solidarity with Children of the Moon began in 2012, Sanaa has made Facebook connections with 70 people who live with XP, now members and beneficiaries of the organization.
The Association of Solidarity with the Children of the Moon has become a community of people who share the tragic genetic disorder, but encounter it with a unique set of challenges.
Fatimezzahra Ghazoui, Driss Hamouti, and Mohamed ElKotbi are three of the association’s beloved, Children of the Moon.
Fatimezzahra Ghazaoui is 22 and lives with XP in direct contrast to Sanaa. Her fingers rarely leave the face of her white iPhone and she has countless stories of night-clubbing and traveling to Marrakesh and Paris with her friends.
Her father ElHabib Ghazoui, 59, became the Vice President of the Association of Solidarity with the Children of the Moon, after Fatimezzahra connected him to Sanaa’s mother, the president.
“I have 3 daughters, but Fatimezzahra is my princess”ElHabib says. “Life is too short, and I want her to profit from it.”
Fatimezzahra leaves her home as she pleases –day or night, covering herself in long sleeves, sunglasses, and a protective mask that the association gave her. But she has also had 35 skin replacement operations, including the removal of a large portion of her tongue.
Driss Hamouti, 21, also lives as he pleases, but in stark contrast to Fatimezzahra.
“The sun doesn’t matter” his sister Wafae Hamouti, 27, admits regretfully. “If he has somewhere to go he will go. He doesn’t care.”
With a tumor on his lip and no chance of seeing a Moroccan doctor, he pursues his hobby of full- contact fighting, runs errands for his mother and sisters, and strolls the neighborhood with friends.
Driss first started showing symptoms when he was but a year old, when he walked around with his eyes shut tight. Even light emanating from a single bulb burned him. The doctors told his parents he was blind.
But Driss wasn’t only blind. His mother Drissia El Ayouti, 58, recalls the day that the XP symptoms went beyond his eyes. She clenches her right fist, holding it within her other hand in front of her stomach.
“He had a fever. It was as if something came up, from deep inside him” she says, exploding her fist up and open.“After that day he wasn’t blind, but his skin was black.”
If the misleading diagnosis weren’t enough to hinder Driss from going to another Moroccan doctor, his father Hamouti Hamouti, 58, a proud member of the Moroccan military, forbids Driss from having operations.
“If my son will die, he will die with my face” Hamouti said.
His family treats his skin with home-made remedies – argon oil and honey lathering like lotion, and burnt strands of green grass, pressed firmly against areas of excess skin.
Unlike most Moroccan Children of the Moon, Mohamed ElKotbi’s, 17, future holds promise.
He lives on the charming countryside of Ouzzene, meandering the valley beneath the shade of olive trees, and working in the crop fields on cloudy mornings. Mohamed has hopes for marriage and future in physics or hip-hop rap.
Mohamed’s future is brighter because of his access to great health care.
With his first tumor on his nose at 13 years old, Mohamed went to a public clinic in Rabat – the capital of Morocco. But public doctors were on a two-week strike at the time, forcing Mohamed to seek refuge in a private clinic.
“Pay me or I won’t help you” the private doctor told Mohamed and his parents.
But 5,000 dirham, roughly $625 American dollars, was an impossible fee for Mohamed’s parents to pay. They live on a commune, exchanging goods and services rather than using money.
According to Madam Benzekri, 47, a doctor and professor of dermatology at the public Hospital Souissi in Rabat, Morocco, there is a government health-care system called RAMED which provides free coverage for families like Mohamed’s that do not have health insurance.
While RAMED covers health expenses, it does not cover the cost of travel –an obstacle of its own for poor families.
While Mohamed does not have a RAMED card, his uncle is a bioelectric engineer, and financed all of his operations at a private doctor.
Moreover, when asked how one can get a RAMED card, Doctor Benzekri responded,
“One has to … there are some files …I cannot tell you because I do not have this card. That’s all.”
Mohamed is a prime example that living with XP in Morocco is possible– but, with proper health care. Without health care, most families like those of Sanaa, Fatimezzarah and Driss put their hope in life itself, or in God.
President Nazha Chkoundi however, refuses to rely on fate for her children of the moon. She continues to contact XP organizations world-wide, asking for UV protectant supplies; she appeals for Western doctors to come to Morocco, and she raises awareness.
Nazha dreams of a government funded safe haven –where Morocco’s Children of the Moon can live, be properly cared for by doctors, and get an education. If her dream becomes a reality, her sweet, brave boy Mounir will not have died without purpose.