Muscle-Eye-Brain Disease (MEB) is a very rare, inherited form of muscular dystrophy. It causes muscle weakness, severe vision impairment, brain structure abnormalities, and profound intellectual disability. There is no cure or effective treatment, and most children with MEB pass away between the ages of 6 and 16.
Ibrahim is the only known case in Spain for many years. He cannot speak or walk and can barely sit without support. His optic nerve did not develop during pregnancy, leaving him virtually blind — able to perceive only light and shadow. Though he grows physically, his mental and physical abilities remain those of a six-month-old baby.
His parents feed him, bathe him, take him for walks, and manage all aspects of his care. As he grows heavier, the physical demands increase — from the back pain of carrying him to the sleepless nights of prolonged crying. Despite the constant challenges, the family remains loving, optimistic, and deeply devoted to one another.
However, their economic situation is fragile. The costs of medication, diapers, a special mat, a custom wheelchair, and other necessities are high, while government aid in Spain has been decreasing year after year.
I began documenting Ibrahim’s life in 2014, when he was four years old, and I continue to photograph him today. Over the years, this project has taken me beyond their home in Madrid — into his classroom at a special needs school, through the streets and daily rhythms of his family’s neighbourhood, and even to Palestine, where Ibrahim’s roots lie and where he connected with relatives and cultural traditions.
This long-term work offers an intimate portrait of Ibrahim’s daily reality — the tenderness, the struggles, and the resilience of a family navigating an illness that will never go away. It is a story about love, endurance, and the ways in which identity and belonging endure across borders.
