Type I Mucopolisacaridosis (MPS1), commonly known as Hurler’s syndrome, is a hereditary disease of the metabolism affecting one in 175,000 live births, placing it directly in the category of rare diseases.
Due to neurological deterioration, life expectancy of children born with Hurler’s syndrome rarely exceeds nine years.
Ignacio Utrilla, ‘Nacho’, is seven years old and lives in Pulgar, a small town near Toledo. He was diagnosed with Hurler’s syndrome when he turned one and ever since, the disease has afflicted the lives of him and his family, roaming from one hospital to the next in a quest for solutions for an illness virtually unknown to anyone.
César Pastor is a freelance reporter specialized in documentary photography. With his close, intimate touch, he tells seemingly impossible stories.
He was selected for PhotoEspaña 2016’s Descubrimientos, earned the National Prize EISA Maestro Photo Contest 2015, was a finalist at the 2015 Beca PhotOn Festival and, among other awards, was granted a Photo Taken Emerging Scholarship by the Lucie Fundation.
A founding member of the photography group Social3200.