My son’s disease progressed while the FDA waited

Birthdays should mark milestones, offer hope for another year, and remind us to cherish the people we love.

But on the first anniversary of the Food and Drug Administration’s decision to restrict access to Elevidys, a gene therapy for Duchenne muscular dystrophy, there will be no cake or candles in our home.

The only birthdays Duchenne families want to celebrate are the ones our children are still here to have. The FDA should help us light those candles.

My 14-year-old son, Ryu, is still fighting to reach another birthday.

A year ago, I was exploring Elevidys as a treatment that might help him live a longer, fuller life. Then, almost overnight, that hope disappeared. The FDA first halted use of the therapy entirely before restoring access only for boys