A Mother’s Fight for Her Son Living with Duchenne (DMD) | Angelina Olivera
Angelina Olivera’s journey with Duchenne Muscular Dystrophy began long before she became a mother. She grew up alongside two brothers who lived with Duchenne and later passed away at young ages, giving her an early understanding of the physical, emotional, and medical realities surrounding this progressive condition. Years later, her life with Duchenne would take on an entirely different meaning when her son, Ryu, was diagnosed with the same condition shortly after birth. Rather than allowing the fear of what she had already witnessed to define her son’s future, Angelina chose to turn her experience into strength, caregiving, and advocacy.
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As Ryu’s full-time caregiver, Angelina has learned that Duchenne muscular dystrophy affects far more than physical strength. She has spoken openly about the emotional exhaustion of watching a child progressively lose abilities, the anticipatory grief that caregivers often experience, and the importance of remaining present even when the future feels uncertain. She also emphasizes how Duchenne impacts the entire family, including siblings who may be gaining independence while watching their brother experience the opposite. Through difficult days, Angelina focuses on taking life one moment at a time, allowing herself space to grieve, and continuing to support Ryu as a person whose identity, dreams, personality, and will to live extend far beyond his diagnosis.
That personal experience has also transformed Angelina into a passionate Duchenne muscular dystrophy advocate. Her fight for greater treatment access has taken her to Washington, D.C., where she has met with lawmakers and shared her family’s story in hopes of creating more urgency around rare disease treatments. For Angelina, advocacy is not only about Ryu... it is about the families who may face a Duchenne diagnosis tomorrow and ensuring they do not feel alone or without options.
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