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Opinion: Following second patient death, Duchenne muscular dystrophy families deserve answers about Elevidys
Duchenne muscular dystrophy families are sharing stories about Elevidys complications on social media. But they aren’t getting answers from Sarepta.
On Sunday at 1 a.m. Eastern time, an announcement went out from the first-generation gene therapy company for Duchenne muscular dystrophy: A second patient who had been treated with Elevidys has died.
This second family said yes to hope, yes to science, yes to the risk, and is now grieving the irreversible outcome of an irreversible drug. Others who also said “yes” are living with consequences from adverse events that we still don’t fully understand: cardiac complications, thrombocytopenia, nausea, vomiting, and elevated liver enzymes.
