EL PASO, Texas (KTSM) — An El Paso mother was in Washington, D.C. to attend a Senate hearing on Thursday, Feb. 26 and to raise awareness about a rare disease that is afflicting her teenage son and the challenge’s they face.

Angelina Olivera said she attended a Senate hearing and talked to senators about Duchenne Muscular Dystrophy.

She said her 14-year-old son Ryu has the disease and she saw two of her brothers die from it earlier.

She issued the following statement saying she feels more optimistic and that attending the hearing was empowering.

“I’ve been fighting against Duchenne Muscular Dystrophy since I was born, watching my brothers die in their early 20s and becoming the full-time caretaker for my 14-year-old son who also has DMD. The FDA’s decision last summer to block Elevidys was devastating for my entire family.

“That’s what made today’s hearing so powerful. For the first time in years, I feel hope. Instead of feeling isolated, I was in a room where lawmakers and other families spoke about Duchenne with urgency and conviction, not resignation. Watching senators express real anger at FDA roadblocks — the same anger I feel as a mother denied access to a potential treatment — was deeply affirming. I can’t thank Senators Rick Scott and Kirsten Gillibrand enough for taking on this fight, and I’m grateful to Senator Ron Johnson for telling me he will take the issue of rare disease treatments to President Trump, if necessary.

“This fight isn’t over. But real progress seems on the way for my son Ryu and other children suffering from DMD.“

The FDA says it put the gene therapy drug to treat DMD on hold after three patients died during medical trials. Days later, the FDA requested to remove the hold after one of the deaths was not linked to the drug.

We have no other information on what may be the hold-up on distributing the drug.

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