It happens in Italy...

Italian Prime Minister Matteo Renzi doesn’t find the time to answer to a message from Sofia’s father. On august 19th 2014, little Sofia De Barros from Florence, Italy, collides another time against the wall of italian bureaucracy. If it was all a figment of the imagination of a human being it would be a work of Kafka. But let’s start from the beginning. It all begins when Sofia was taken ill with a disease that leaves no escape, metachromatic leukodystrophy, also called MLD, officially incurable. Now Sofia is only five and she’s sick since she was two; she  can’t heal, but she could live better and suffer less. Sofia unfortunately is already addicted to pain killers therefore she became  drug-resistant. The treatment no longer has any effect on her. Two years ago Sofia began a therapy based on stem cells that, inexplicably for science, gave her a bit of relief. It made her life better and she gained some dignity that one should not even deny to the worst enemies. After a while the institutions decided that this therapy could not be done to anyone. It was considered "Dangerous" because nobody knows the risks of this therapy yet. The italian bureaucraty said, “STOP!" But Sofia’s parents, like the ones of many other sick children, said "no, we don’t agree" and turned to another state power, this time different, they turned to the judicial power. The judges, evaluated each question thoroughly and they have given the rights to patients already under therapy like Sofia, to follow the stem treatment. Shouldn't this be enough ? No !! The doctors who made more than 400 infusions of stem cells are now on a “consciousness strike” and they don’t do infusions any longer. Nobody knows the real reason of this strange kind of strike… Meanwhile Sofia and the others get worst every day:  breathing problems, swallowing with difficulty, they lose their appetite, and have muscle spasms. So what did parents do? Did they give up? Of course not! They went to the same judges who have ruled to allow them to continue the treatments and asked them to do something because their judgments are respected. Unthinkable! Some judges appointed doctors who were volunteering to work on it meanwhile other doctors stated that they couldn't appoint anyone, not even the volunteers, because this was outside of their power. There’s a little bit of confusion, I must admit it. And then our little Sofia, to whom the Court first said in 2013 "do the therapy" and then to whom the court said in 2014 "we can’t assign you any doctor  to follow the treatment because this is out of their power”, what would she think of us? Sofia's parents never gave up and they went to three other judges, just because they didn't agree with the 2014 decision. They  want to follow the therapy! She wants to eat ice cream with the spoon as before but now she’s fed artificially. Are you following me? Right! That brings us to August 19th when Sofia’s father, with his attorney, appeared in front of the three judges. Who was missing? The hospital! Why? Because we were in august and the post offices were very busy and behind schedule and the notification to the hospital wasn’t made ​​on time. Easy. So what are the options? The judges didn’t lose their heart and said  to Sofia to come back on the second of september at 9:30 a.m. But it’s not over yet. A public prosecutor inquired the man who “invented” this method of infusing stem cells to confiscate the cells from the laboratory of the hospital, by doing this he took away the possibility to make the therapy available to the people authorized by other judges. On September second 2014, the judges rejected their request  therefore they did not assigned her any doctor for the treatment. Sofia's mother speech.

What do you think about that? For more information visit the twitter hashtag #iostoconsofia or email info@voavoa.org.

Giovanni Mennella

@GioMenny

(translation Orsola Fezzi - NYC)