BOSTON – Everything is ready for little Panagiotis-Raphael Glossiotis to receive the unique gene therapy which is scheduled to be performed on Thursday, November 21 at the famous Boston Children’s Hospital by the internationally renowned Greek-American doctor, researcher, and professor of medicine at Harvard University Dr. Basil Darras.
Panagiotis-Raphael Glossiotis, an 18-month old child from Greece, has been diagnosed with spinal muscular atrophy, also known as SMN1, has been in Boston since November 14 and has undergone the necessary tests at Children’s Hospital. The results were excellent, engendering optimism about the treatment which is so pivotal for his life.
Dr. Darras, was born on the island of Samos in Greece and is the leading expert in his field. He is Associate Neurologist-in-Chief; Chief, Division of Clinical Neurology; Director, Neuromuscular Center and Spinal Muscular Atrophy Program Professor of Neurology, Harvard Medical School.
He said that “SMA is a progressive, rare genetic disease that is caused by a survival motor neuron 1 (SMN1) gene that is missing or not working properly,” adding that researchers are working on how SMA is inherited, the role of the backup gene, and the signs and symptoms of SMA.
SMA is an autosomal recessive disorder, meaning that a person must inherit one copy of a nonworking or missing gene from each parent to have the disease.
In an interview with The National Herald Georgios Glossiotis, little Panagioti’s father, said “thank God everything is going well and we are ready for the therapy.”
They arrived at Boston’s Logan airport on Thursday night, November 14 in a special ambulance aircraft. He said, “although the trip was very long, it was a 15-hour flight from Greece, little Panagiotis did very well, he didn’t need anything, not even oxygen, everything was very good.”
Panagioti’s parents, Georgios and Eleftheria, met Dr. Basil Darras for the first time on November 15. Glossiotis said, “I am very happy to meet and got to know Dr. Darras. He is an exceptional man, very friendly and accessible. He is very optimistic about the new therapies. Everything will go well.”