Guest Writers

Care defines us as parents of two boys with Duchenne muscular dystrophy. As their bodies weaken, grief is constant, yet so too is wonder: Oskar accepts with innocence, Theodor resists with fierce intelligence. Caring for them is humbling—an act of defiance and unconditional love, ensuring their spirits remain undiminished. The disease may take much, but it will not define them; their courage and will always shine through.

On a summer’s afternoon, lost in depression, a father imagines his son Theodor soaring through clouds like a superhero. The vision pulls him from despair, reminding him of Theodor’s fierce intelligence, courage, and defiance in the face of Duchenne muscular dystrophy. In his son’s gaze, he finds strength and hope, carried aloft by love. Theodor whispers the simple truth that restores him: “All will be ok, Daddy, all will be ok.”

A father writes to his son Oskar, calling him his greatest teacher. Through Oskar’s gaze, smile, and innocent wonder, he finds release from anger, permission to surrender, and glimpses of pure presence. From sunflowers and raindrops to the silver hairs in his beard, Oskar helps him see life in its truest form—beyond thought, grief, and struggle. In gratitude and love, he honours Oskar’s wisdom and healing spirit.

Michael McGrath MBE, founder and CEO, Muscle Help Foundation, sets the scene on a substantial body of work driven by our friends at The Muscle Help Foundation in partnership with the University of Hertfordshire, which looks at how we can better understand and support families through grief and bereavement. Reproduced with permission, copyright Rare Revolution Magazine.

With community at the heart of Mental Health Awareness Week, Michael McGrath MBE highlights the urgent need to support young people—especially those living with Duchenne Muscular Dystrophy. In this blog, he explores the rising mental health challenges and shines a spotlight on Harrison’s Fund’s Project Chrysalis, a vital initiative offering funded access to expert psychological support for families affected by DMD.