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A innovative gene therapy, the only one of its kind, authorized in Europe last May and in Italy less than a month ago, on November 17, thanks to which it was saved, inSantobono Hospital in Naples, a girl of only 6 months, who suffers SMA, spinal muscular atrophy. For the therapy, what is considered the most expensive drug in the world was used: 1.9 million euros for a single treatment. SMA type 1, which affects the baby, is a very serious genetic disease that arises immediately after birth and causes progressive muscle weakness, which affects and also compromises swallowing and breathing, unfortunately causing death. The little girl, after having undergone the innovative gene therapy, was under observation for a week, but now she is fine and was able to return home. The one carried out in Santobono is the first treatment of its kind that has been carried out in Italy.
The child’s father, Luigi russo, wanted to thank the entire Neurology team of the Santobono UOC, led by the professor Antonio Varoneand, in general, all those who have done everything possible for the care of the child. “At first it seems all black, an endless tunnel. Now, thanks to this drug that arrived before little Sofia was 6 months old, we can all wait and see the long-awaited light at the end of the tunnel. I hope that our little girl can act as a Guide to all others affected by this disease. Thanks also to all the nurses in the Neurology department, ”he said.
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