Opinion

My son has a terminal disease — why FDA delays are failing families like mine

The departure of FDA biologics director Vinay Prasad creates an opportunity for a reset

By Angelina Olivera Fox News

Published April 29, 2026 5:00am EDT

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I’ve spent over 40 years on the front line against a terminal illness that killed my brothers and put my 14-year-old son into a wheelchair. This week, I asked Food & Drug Administration (FDA) Commissioner Dr. Martin Makary to leave his gilded office and come visit my home, because I fear that he’s lost touch with terminally ill children like Ryu. 

I’m Ryu’s full-time caretaker. Like most rare disease families, we rely on one income and have limited financial resources. What we do have are astronomical medical expenses; Ryu’s steroids alone are $30,000 per month. My husband and I thankfully found a nonprofit that covered the remaining $2,000 after our insurance paid their portion — but other expenses fall squarely on us. 

It’s easy to ignore these struggles when you’re a powerful official in Washington, D.C. In my house, Ryu struggles to breathe because of Duchenne muscular dystrophy, the same........

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