A few months after Panagiotis Rafail Glossiotis returned to Chalkida from Boston, where he underwent an experimental gene therapy, the young boy is experiencing a miracle, his father told EviaZoom.
Brave little Panagiotis Rafail, touched the hearts of Greeks worldwide after it became known that he is suffering from a rare life-threatening condition called Spinal Muscular Atrophy (SMA). Millions of euros was raised for the little boy to fly to the United States with his parents in order to undergo experimental therapy at Boston Children’s Hospital, in Massachusetts.
“Thank God everything has gone well, the little one has received treatment, we have seen great improvement, especially in the respiratory part where we were lagging behind, and we have a future ahead of us. We follow special treatment, physiotherapy, speech therapy, etc.,(…) We thank the whole world, Chalkida, the local community supported us very much and we thank them all from the bottom of our hearts, and those of you who dealt with the issue at a time when no one was concerned,” said Panagiotis’ father, George.
Spinal Muscle Atrophy is a rare, degenerative and until recently terminal disease affecting the entire musculoskeletal system, including swallowing and breathing. Type I is the most serious with a life expectancy of 2 years without treatment and it was imperative Panagiotis have this treatment at Boston Children’s Hospital prior to being 24 months of age.
“The child received his treatment and there is no recurrent dose, gene therapy is an injection and it’s over. There is a lot of improvement. We have a child who is standing up and has become autonomous, he is playing with his toys alone in his room, he opens cupboards, he goes alone to his room, to the kitchen, to living room. We are talking about things that people cannot understand. It’s a Miracle! We’re talking about a condition that keeps you in bed, we’re not talking about a condition that you just can’t walk. You have breathing problems, you can’t support your head and raise your hands. Thank God. Thank you very much for everything,” he added.
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