The power of music for our daughter with epidermolysis bullosa
Through rhythm and movement, Little Star is able to express herself fully
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When we decided to enroll our 5-year-old daughter, whom we’ve nicknamed “Little Star,” in a music and piano course, we didn’t do it with the future in mind. With her epidermolysis bullosa, “future” is a fragile word, one you learn to whisper. We don’t know how long she will be able to use her little hands; we don’t know what her body will allow her to do tomorrow. Nothing is guaranteed, nothing can be planned. And perhaps that is precisely why we choose the present.
Her father and I decided to encourage her on this path, not as a challenge, but as a gift. Little Star is not only a child with a severe skin condition. She also has an incredibly refined ear, is able to recognize a melody from the very first note, and follow a harmony as if it always belonged to her. She is beautifully in tune, loves to sing, and feels the rhythm in her body, turning it into movement and dance — even when her legs and feet hurt later, reminding her of the price of that freedom.
I watch her dance and think that perhaps this is her remedy for pain: rhythm, movement, and music that moves through the body instead of stopping at the skin. For her, dancing isn’t about forgetting pain, but rather exorcising it. It’s a way of telling her body, “I am here, too, not only the wounds.” Music, for her, is neither therapy nor distraction. It’s a space of authentic expression, where she can exist without being constantly reduced to her illness.
A way to decenter illness
Music and other means of expression allow people like Little Star to avoid identifying exclusively with their condition, disability, or daily pain. They offer these individuals the opportunity to be seen as whole people — with beauty, intelligence, sensitivity, and originality. In these expressive spaces, illness ceases to be at the center, becoming only a frame.
Encouraging this journey was the right choice. Honoring our daughter’s courage was necessary. It was right to give her space to discover, to test herself, to live every moment of her existence with intensity, without postponing beautiful things to a vague “when it will be possible.” For Little Star, the right moment is now.
We firmly believe that offering her opportunities to express herself and develop that which makes her unique — rather than focusing on her limitations — is one of the most authentic ways to respect her as a person. Because no one should be defined only by their fragility and limits, when they have so much to say to the world.
Little Star is far more than a child with a disability. She is a luminous example of stubborn joy, quiet strength, and daily perseverance. We don’t know where life will take her, nor where it will take us as we walk beside her. But we know one thing for certain: We want to accompany her on this journey, allowing her to experience the most beautiful things for as long as possible, for as long as her heart desires.
And even if one day her little hands should have to stop, the music will have already done its work: It will have taught her that pain is not the body’s only voice, and that beauty, when it arrives, deserves to be welcomed without fear.
Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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