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Meet Javier Santino

From Peru / Florida
Age: 1

It all started when he was 3 months old when we took him to a medical consultation and they found him tachypneic. He was given routine exams and they discovered he had diaphragmatic eventration. They decided to surgically intervene, however, a month later it was obvious the surgery was unsuccessful.  At that time, he also contracted the parainfluenza virus type 4 and due to his delicate state of health, they decided to operate again. Unfortunately, from that moment on he became dependent on mechanical ventilation 24 hours a day. When he was just about 5 months old, he underwent surgery for a tracheostomy.


Many tests were performed while in Peru, however the doctors could not determine a diagnosis. It was suggested that we move to the United States and it was here that we were told Javier has spinal muscular atrophy with respiratory distress (SMARD1) 1. He also has been diagnosed with lordosis and scoliosis, which are consequences of his muscle atrophy. When he was just over a year old, he underwent a surgical intervention to place a halo on his head, and about a month later, he had another surgery for a total correction of the spine. He also had g-tube surgery around this time to allow him to consistently gain weight.


My son is a very strong, brave, and very happy child. Santino shows us all everyday his desire to continue living and he is our reason for life. Even at his young age, he has touched people with his will to fight. He is a beautiful baby

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