I hope this letter finds you well. As a Marriage and Family Therapist, I want to share some of my personal and professional reflections based on my experience both during my academic training and in my clinical practice—particularly in supporting families with a child diagnosed with Duchenne muscular dystrophy (DMD).
During my graduate studies, I was introduced to a wide range of family systems and clinical dynamics, but it wasn’t until my clinical practicum that I first encountered a family whose lives were shaped by Duchenne. This family had three children: one with DMD and two without. That experience left a profound impact on me—not only because of the complexity of the medical challenges they faced, but also because of the strength, vulnerability, and deep love that ran through their relationships.
Professionally, I’ve learned that families navigating a diagnosis like Duchenne face layers of emotional, logistical, and relational challenges. Parents often struggle with balancing the specialized care needs of one child while still ensuring the emotional well-being and attention of their other children. Siblings may experience a range of feelings—guilt, jealousy, protectiveness, or even grief—as they try to make sense of their brother’s condition and its implications on family life.
My role as a therapist has been to create a space where all family members can process these emotions honestly. I have found that helping parents communicate openly with all their children, and empowering siblings to express their own experiences, can foster deeper understanding and unity. Sometimes, simply helping a sibling feel seen and heard—outside the context of their brother’s condition—can be incredibly healing.
In my work, I also emphasize the importance of hope and resilience. While Duchenne brings real and often heartbreaking challenges, I have consistently seen families cultivate incredible strength and adaptability when they are supported emotionally, spiritually, and socially. Part of my work involves connecting families with broader resources, peer networks, and support systems that affirm their experiences and help them feel less alone.
It is a privilege to walk alongside families on these journeys. Every story I witness reminds me why I chose this field—to support, to listen, and to help families find meaning, connection, and healing even in the midst of uncertainty.
Please know that you are not alone. Your family’s journey matters deeply, and there are professionals like myself committed to supporting every step you take.
Warmly,
Ana Estrampes de Barbeito
