40 years, 2 brothers, and 1 son: My lifelong fight against Duchenne muscular dystrophy

By Angelina Olivera, Op-ed contributor Thursday, April 09, 2026

I’ve been fighting Duchenne muscular dystrophy for 40 years. My brothers Angelo and Antonio died from it at ages 20 and 22, respectively. Antonio died in 2015, when my son Ryu was barely a toddler … and had already been diagnosed with the same terminal illness.

My childhood memories are of praying for my brothers, caring for them with Mom and Dad, and Mom taking all five of her kids to church almost every day. I always asked God to heal my brothers, and — after Ryu was born — I added him to those prayers.

But I also went to God with another prayer — that He would open the door that allowed me to share our family’s story. I didn’t know what that looked like, or when it would come, but I trusted in it. 

This year, that prayer was answered when I was asked to speak out not just on behalf of my brothers and son, but for every family that feels isolated because of a terminal rare disease. I visited Washington, D.C., to share my story with lawmakers from both parties as well as patient advocates, and to ask them to push the Food & Drug Administration to stop standing in the way of drugs like Elevidys, the only gene therapy treatment for Duchenne. 

And it worked. I can’t say how much my small voice, speaking up for the first time, meant. But so many people speaking up made a difference. The first indicator was when CBER Director Dr. Vinay Prasad announced his resignation from the FDA just a week later — he leaves this month. Prasad blocked treatments, with the support of FDA Commissioner Martin Makary, that could have helped kids like Ryu live across the country. 

I’m just a mom. But we recently celebrated Easter, where a carpenter saved the world. He overcame the establishment of His time, which was willing to throw the vulnerable and sick to the side. He fell, but He didn’t falter — and I won’t, either.

As we were approaching Holy Thursday this year, Ryu was having a hard evening. He needed his Bipap machine to help his lungs function, as he so often does. But he looked at me — my 14-year-old wheelchair-bound boy who is the happiest kid I know — and said, “Mom, this sucks. But what you’re doing makes it a lot easier.”

My story may not matter to FDA Commissioner Makary, who seems to have forgotten about Ryu and thousands of other kids like him. But God sees every hair on our heads. He named us before our parents knew us. And, sometimes, like Gabriel told the prophet Daniel, prayers are answered long before we see their fruition. 

I’ve been saying the same prayer for help and to be able to lend my voice for over 40 years. To the world, Antonio and Angelo may be long deceased, but they are the foundation for how my husband and I have cared for Ryu. And God has allowed me to carry their stories from my home in El Paso to our nation’s capital.

Commissioner Makary and Dr. Prasad may have forgotten that their job is to save lives. But God? He’s just getting started with me in spreading His Good News, and you know what? It’s amazing. But I’m also not surprised, because I knew God would take care of it all.