Greek toddler Panagiotis Rafael Glossiotis, who moved Greece with his parent’s plea for funds to treat his rare disease, will soon travel to the US to receive gene treatment under the direction of Greek-American neurologist Basil Darras.
Dr. Darras, whose titles include Associate Neurologist-in-Chief, Chief of the Division of Clinical Neurology, Director of the Neuromuscular Center and Spinal Muscular Atrophy Program and Professor of Neurology at Harvard Medical School, will lead the team taking care of Panagiotis Rafael.
The young boy suffers from “Type I Muscular Atrophy,” the number-one cause of infant mortality. The Glossiotis family is expected to arrive at Boston Children’s Hospital on November 14.
After the decision of the Greek state not to fund his trip to the US, due to medical concerns about the experimental, breakthrough treatment offered by this American hospital, a huge wave of support for the adorable child began to swell in the country.
In the space of only a few weeks, small individual donations raised more than €3.7 million, making it possible for the Glossiotis family to travel to the US and pay the enormous fees of the hospital. The treatment is as expensive as it is because of its experimental nature, as these drugs are not yet produced commercially at this time.
The Harvard Medical School professor was born and raised in Greece, where he graduated from the University of Athens Medical School in 1977.
Dr. Darras’ page on Boston Children’s Hospital’s website notes ”My approach to care reflects my interest in the genetic basis of neurological disease and my desire to practice on the forefront of clinical care and research.”
Young Panagiotis-Rafael, from Halkida on the island of Evia, is in a race against time to remain alive. His rare condition results in the loss of motor neurons and extensive, progressive muscle wasting.
For this reason, Darras’ treatment may prove to be a gift of life itself for the young boy.