Slovak Parents Fight to Save Toddler with Spinal Muscular Atrophy as State Denies Drug Coverage

The parents of a young Slovak girl named Ruby are fighting to secure access to a life-saving medication for their daughter, who suffers from spinal muscular atrophy (SMA), a rare and progressive neuromuscular disease. Without the treatment, her parents say she is unlikely to survive past the age of two. Slovak health authorities have denied coverage for the drug, leaving the family facing the prospect of paying for the expensive medication entirely on their own. Ruby's mother, Zuzana Sálusová, described the situation as deeply unjust, saying it is "insane" that only two people — the child's parents — appear to care about saving an innocent child's life, while state institutions remain indifferent. The family argues that science offers a path to saving Ruby, but bureaucratic decisions have blocked access to treatment that could make a meaningful difference. Spinal muscular atrophy is a genetic disorder that causes progressive muscle weakness and can be fatal in early childhood if left untreated. Modern gene therapies and specialized drug treatments have transformed outcomes for SMA patients in recent years, but these medications are among the most expensive in the world, placing them out of reach for most families without state support. Slovakia's drug reimbursement system, administered by health authorities, determines which treatments are covered by public health insurance — and in Ruby's case, the decision has gone against the family. If no solution is found, the parents will be forced to seek alternative means of funding, potentially through public fundraising or legal challenges.