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AdvocacyRSSFriday, May 1, 2026 · May 1, 2026

I am watching a child lose his independence for the third time

WHY IT MATTERS

Families living with DMD need to understand the typical disease progression and prepare for mobility changes, as this firsthand account describes the real-world impact of losing independence at different ages across multiple children.

A parent shares their experience watching their 15-year-old son Charlie lose the ability to move independently due to Duchenne muscular dystrophy (DMD), a genetic disease that causes muscles to weaken over time. This is the third of the parent's sons to experience this same progression. The article highlights the emotional and practical challenges families face as DMD gradually takes away their children's independence.

My son Charlie has recently been unable to get into his power wheelchair on his own, and I know I am watching him lose the ability to ambulate, as I did with two of my other sons. Charlie, 15, like his brothers Max, 20, and Rowen, 17, lives with Duchenne muscular dystrophy (DMD). I also […] The post I am watching a child lose his independence for the third time appeared first on Muscular Dystrophy News .

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dmdmuscular dystrophydisease progressionpatient perspectivemobility loss

Related conditions

Duchenne muscular dystrophy

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