M.E.B.

MEB is the acronym for Muscle-Eye-Brain Disease, a very rare disease. Ibrahim suffers this type of muscular dystrophy, being the only case known in Spain for years. It is an inherited condition causing a number of symptoms including muscle weakness, vision impairment, brain structure abnormalities, and severe intellectual disability. There is no successful treatment or cure for MEB. Studies have shown people with MEB typically dying between the ages of 6 and 16. Ibrahim is unable to talk, he can’t walk and can barely remain seated without help, among other situations related to his disease, which will never disappear. Besides, his optic nerve didn´t develop during the pregnancy, which makes him virtually blind, distinguishing only light from shadows. My Project aims to document Ibrahim’s daily life, with his family and in his environment, and the increasing difficulties of his care.

Though Ibrahim grows and his weight increases, he remains physically and mentally as a 6 months baby and his parents must take care of his feeding or his daily hygiene as well as taking him for a walk and other basic things in everyone’s daily life. This is their life, the life of a happy and optimistic family, in which all the members struggle to get along with the illness of the beloved youngest member of the family, with the headaches or the lack of sleep due to hours of baby crying, or the terrible parent’s backache from carrying the baby around. MEB is the acronym for Muscle-Eye-Brain Disease, a very rare disease. Ibrahim suffers this type of muscular dystrophy, being the only case known in Spain for years. It is an inherited condition causing a number of symptoms including muscle weakness, vision impairment, brain structure abnormalities, and severe intellectual disability. There is no successful treatment or cure for MEB. Studies have shown people with MEB typically dying between the ages of 6 and 16. Ibrahim is unable to talk, he can’t walk and can barely remain seated without help, among other situations related to his disease, which will never disappear. Besides, his optic nerve didn´t develop during the pregnancy, which makes him virtually blind, distinguishing only light from shadows. My Project aims to document Ibrahim’s daily life, with his family and in his environment, and the increasing difficulties of his care. Though Ibrahim grows and his weight increases, he remains physically and mentally as a 6 months baby and his parents must take care of his feeding or his daily hygiene as well as taking him for a walk and other basic things in everyone’s daily life.

This is their life, the life of a happy and optimistic family, in which all the members struggle to get along with the illness of the beloved youngest member of the family, with the headaches or the lack of sleep due to hours of baby crying, or the terrible parent’s backache from carrying the baby around. Another thing is the family´s economy, which is very weak because of the medication, diapers, special mat, trolley and a long etcetera. And the Spanish government aids are decreasing each year.  I started this project in 2014, when he was 4 years old, nowadays I am still shooting.




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