For 800 children in Morocco, damaged or burnt skin is genetic, irreparable, and needs to be replaced. Mohamed-El Kotbi, 17, and Driss Hamouti, 21, live with this tragic condition. Due to a disease called Xeroderma Pigmentosum – which medical professionals generally shorthand to XP – they are prone to blistering and burning of their skin and eyes upon the slightest sun exposure
According to the National Cancer Institute, there is a 10,000-fold increased risk of skin cancer for someone who has XP. The National Institute of Health reports a prominence of non-melanoma skin cancer at a median age of nine.
Most children, teenagers, and young adults who live with XP in Morocco, die before they reach 30 years old. For them, access to health care is a matter of life and death; hope and despair.
Mohamed El-Kotbi, 17, has had two successful skin replacement surgeries and has hopes for a professional future in physics, or hip-hop rap. One of his raps includes an image of heaven – a heaven of big clouds and soft shadows, and no more XP.
Driss Hamouti, 21, has not had any skin replacement surgeries and lives with a cancerous tumor on his face. He makes the best of his remaining days. Driss spends time with friends and family, loves cars and his pet turtle, and spends most of his daytime asleep.
His family treats his skin with homemade remedies – argon oil and honey lathering like lotion, and burnt strands of green grass, pressed firmly against areas of excess skin. Both Mohamed and Driss have come to terms with their condition. It is with God’s will, they say, that they were born the way they were.
“Driss used to ask why he was not like us,” says sister Wafae Hamouti, 27, “We would tell him, ‘you are not like us, you are better.'”
Article by Franny Krieger, photographs by Rachel Woolf