Pantelis Costa and his wife’s world turned upside down when their son, Konstantinos Efraim, was diagnosed with Spinal Muscular Atrophy (SMA) at just two months old.
Their ordeal, as reported by philenews, highlights the gaps in Cyprus’s healthcare system for critically ill children.
Missed opportunity for early treatment
Costa blames the lack of newborn screening for SMA in Cyprus for his son’s irreversible condition. “If this test had been available,” he says, “Konstantinos could have received treatment within the first 20 days and be walking today.” He points out the case of another child, Antonis, diagnosed with SMA five years ago, proving the authorities were aware of the disease and the crucial window for early intervention.
Bureaucratic hurdles hinder care
Konstantinos eventually received treatment, but Costa describes a constant struggle with the healthcare system. He criticises the lack of essential equipment, like a cough machine, and the bureaucratic delays in getting a qualified doctor to operate it, putting his son at risk.
The Costas have been pleading for home care and nursing support for four months, facing alleged mockery from officials. “It has been tragic,” Costa says. “If it weren’t for me, the baby would have died” due to a drop in oxygen levels. He offered to become a certified nurse himself to ensure his son’s safety but received no support.
Financial assistance arrived late, leaving the family reliant on friends and relatives for thousands of euros. Necessary equipment like portable oxygen had to be purchased out of pocket. Constant trips to specialists add to the financial hardship, with a meagre €150 monthly allowance falling far short of the actual €700 expense.
Konstantinos has been hospitalised ten times, with some instances potentially avoidable with proper care. The constant fear and stress have taken a toll on the parent’s mental health.
Costa condemns the lack of response and empathy from the Ministry of Health and Nursing Services.
He plans legal action against the state for the absence of newborn screening and home care.Healthcare system. healthcare system, Spinal Muscular Atrophy, bureaucratic hurdles
