Edo was born in 2018, and immediately his parents Jessica and Gabriele recognized something was wrong. They told the medical staff that it was strange that the baby didn't cry and was still released. They told them "the mother is tired, and the baby is tired, don't worry". After the third time, the parents called for help, and almost an hour later someone finally came to give a real look at Edo and found him in a deep cardiac arrest. He took Edo and started to run toward the intensive care unit, but it was too late, he already got the most severe possible damage to his brain. Edo suffered from a pretty common condition, that is post birth suffering, but usually medical staff is very attentive and gives a little slap to the child and with some oxygen it normalizes. In our case instead the misconduct from the staff let suffering persist and degrade causing very severe damage. They told us that our son would not pass the night.
After 2 months in ICU here we are at home with a child unable to swallow even his own saliva, with a tetraparesis, 4-5 daily vomiting episode (and subsequent inhalation of gastric material, resuscitation maneuvers done at home by us parents - day and night). But we believe in him and start a tough rehab program, fighting for each little improvement. We work with Edo every day, on weekends, on Christmas, every day, no matter what. And we are seeing great improvement in him (follow us on Instagram @associazione_espera to see what he is able to do now!).
These are tough times. Sleep is a mirage (we cannot sleep more than 2 hours per time because we have to perform bronchoaspiration on Edo to avoid him suffocating himself with his own saliva). Days are without a break, sometimes we do not have time to eat or to have a shower. It is simply not possible to really care for a severely disabled child without help. So we decided to seek out Espera, a non-profit to get the help we need and also give it to other families in our same situation. Espera uses its network of professional pediatric nurses, physiotherapists, speech therapists, neuropsychiatrists and so on to help these families at home. To help them give their little children a chance to improve. A chance to be happy, surrounded with love, and live a full life.