(HealthDay)—Its extremely high price tag means that a lifesaving medication to treat young children with spinal muscular atrophy is simply too expensive for most families.

A single dose of Zolgensma costs $2.1 million, the highest per-dose price ever, NBC News reported. That puts the drug—approved by the U.S. Food and Drug Administration in May—out of reach for many parents of infants with spinal muscular atrophy.

Sarah Stanger’s son Duke has the illness. “I was pretty shocked” by the price, Stanger told NBC News. “You know, as a teacher we definitely don’t have $2.1 million, and I don’t know anybody who does.” Her family’s insurance company refused to pay for the drug, which doctors said was the best option for Duke. “With no treatment, most children will pass away by age 2,” Stanger said.

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