nikad
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The Bustos Fierro family it is formed by Javier and Cecilia, parents of 4 children: Agustín, Joaquín, Sofía and Matías; they are 14, 11, 9 y 5 years old. They live in Córdoba, Argentina.
Until recently they were an ordinary family as we see everyday, with highlights and lows, joys and sadness, successes and failures, but always looking foward trying to be a better family everyday.
But one day, Agustín had something similar to an epilepsy episode with autism and loss of consciousness. Medical studies gave us the worst result we could expect : adrenoleukodystrophy..
Even worse, our two other boys suffer the same disorder, no sintoms yet fortunately, but most probably they will turn up in future…
Currently, researchers at The Children’s Hospital at the University of Minnesota, Dr. Charnas and Dr. Orchard, are investigating Mucomyst as an adjunct to bone marrow transplant, with some increase in survival time after transplant in 3 patients.
