The family of 18-month-old Panagiotis-Rafael Glossiotis from Halkida on the island of Evia, who suffers from spinal muscular atrophy (SMA) is fighting a campaign to raise almost 3 million euros to send the toddler to the US for treatment.
Greek medical authorities advising the government have ruled that the state cannot cover transportation and hospitalization costs, as the treatment offered in the US for this deadly decease has yet to be proven effectual.
They also state that the treatment may have severe side-effects and has yet to be endorsed by EU authorities.
SMA results in the loss of motor neurons and progressive muscle wasting. Muscles in the arms, legs and respiratory system are generally affected first. Associated problems may include issues with swallowing, scoliosis, and joint contractures.
SMS is a leading genetic cause of death in infants.
Greek Minister of Health Vasilis Kikilas and Christos Iatrou, the chairman of the Supreme Health Council, met with Panagiotis-Rafael’s parents on Wednesday and told them that the state cannot cover the toddler’s treatment in Boston.
However, the child’s father insists that he has assurances from doctors that the treatment offered in the United States is perfectly safe. “Without this treatment, he will die,” the desperate father told interviewers from Greek television.
Panagiotis-Rafael’s mother, Ria Bakali, told Radio ENA that “There was no way I was going to put my child at risk if some doctors had not assured me that the drug will be 100 percent effective.”
The president of Greek Pediatric Neurosurgery, Dr. Argyrios Dinopoulos, said in an interview with Proto Thema that US medical authorities approved a new drug which is used in gene therapy for SMA in May of 2019. The new medication is sold under the trade name “Zolgensma.”
“A single intravenous infusion resulted in extended survival and improved mobility, whereas infants who received treatment early in the course of the disease had a higher likelihood of better outcomes. The treatment has not been approved in Europe since the collection of study data in Europe is not over yet,” Dr. Dinopoulos notes.
The Glossiotis family says that half the amount required for treatment in the US has already been raised from donations from the Greek public and a range of organizations. They are currently appealing for more donations, including from the Greeks of the worldwide diaspora, to save their son’s life.
The parents have set up a GoFundMe campaign and a PayPal account for Panagiotis-Rafael’s treatment expenses. More information on the toddler’s medical journey can be found by visiting the family’s Facebook page here.