Your Child Has Been Diagnosed with Duchenne Muscular Dystrophy - What Does This Mean?

Hearing the words “Your child has Duchenne Muscular Dystrophy (DMD)” can feel overwhelming. It’s completely normal to have lots of questions and wonder what comes next.

While every child’s journey is different, understanding the condition and planning ahead can make a real difference. Research by Occupational Therapist Martina Tierney, in The Clinician’s Seating Handbook: A Reference Guide for Clinical Seating Provision, highlights how early support, particularly around seating and positioning, can help children stay comfortable, active, and engaged as they grow.

What is Duchenne Muscular Dystrophy?

Duchenne Muscular Dystrophy is a genetic condition that causes muscles to gradually become weaker over time. It most commonly affects boys, with the first signs often appearing between 2 and 5 years of age.

You may notice your child:

• Falls more often than other children.

• Has trouble getting up from the floor.

• Finds it difficult to climb stairs.

• Walks more slowly or tires easily.

• Struggles to lift their arms above their head.

One common sign is called Gower’s Sign, where a child uses their hands to “walk” up their legs to stand because their leg muscles aren’t strong enough to lift them up on their own.

Why Does Seating Matter?

When people think about wheelchairs, they often think they’re only needed when someone can no longer walk.

In reality, good seating is about much more than mobility.

As DMD progresses, the muscles that help us sit upright become weaker. A well-designed seating system can help:

• Keep your child comfortable.

• Support good posture.

• Reduce tiredness.

• Make breathing easier.

• Protect the skin from pressure areas.

• Allow your child to enjoy school, family outings, and everyday activities.

The goal isn’t to take away independence, it’s to support it.

Planning Ahead is a Good Thing

One of the biggest messages from Martina Tierney’s research is that seating should be planned before major problems develop.

Because DMD changes over time, your child’s seating needs will change too. Choosing equipment that can grow and adapt with them helps ensure they continue to receive the support they need throughout childhood and adolescence.

Planning ahead doesn’t mean expecting the worst, it means giving your child the best opportunity to stay comfortable, healthy, and involved in the activities they love.

You’re Not Alone

A diagnosis of DMD often means working with a team of healthcare professionals, including physiotherapists, occupational therapists, paediatricians, and other specialists. Together, they help support your child’s movement, comfort, and independence as their needs change.

Regular assessments are important because even small adjustments to seating, posture, or equipment can make a big difference to everyday life.

Our Message to Families

Receiving a diagnosis of Duchenne Muscular Dystrophy can feel incredibly daunting, but you don’t have to navigate it alone.

At Move2Perform Physiotherapy, we believe in supporting not just the child, but the whole family. By combining compassionate care with evidence-based practice, we work alongside families to help children stay as comfortable, active, and independent as possible.

As highlighted by Martina Tierney in The Clinician’s Seating Handbook, thoughtful seating and positioning are an important part of long-term care, not just for mobility, but for comfort, health, participation, and quality of life.

Every child is unique, and with the right support, equipment, and care team, families can feel confident they’re giving their child the best possible foundation for the future.

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Reference

Tierney, M. The Clinician’s Seating Handbook: A Reference Guide for Clinical Seating Provision. Occupational Therapist.