Duchenne in childhood
Learn more about how to manage Duchenne during childhood.
If your child has been diagnosed with Duchenne, you may feel overwhelmed and unsure where to start. These feelings are normal.
Duchenne is a serious condition, but with the right care and planning, children with it can enjoy happy, fulfilling lives.
Here we explain what you can do during the early years to help your child stay healthy, active, and included.
Telling people and getting support
Build your care team
Ask your GP for a referral to a specialist neuromuscular clinic. These clinics coordinate care across physiotherapy, cardiology, respiratory, and nutrition.
Share the diagnosis
Share the diagnosis with school or nursery. Early communication helps staff plan support.
Contact peers
Connect with other families whose children have Duchenne. Peer support can make a big difference.
Plan regular check-ups
Your child should have assessments every 4–6 months to monitor growth, mobility, and overall health.
Pysiotherapy and movement
Physical therapy is essential from the start. The goal is to preserve flexibility and function, not to build strength.
Stretching
Begin daily stretches early to prevent contractures (tight joints). Your physiotherapist will teach you how to do these safely.
Exercise
Encourage gentle, fun activities like swimming or cycling. Hydrotherapy is excellent because water supports the body and reduces strain.
Avoid high-impact or eccentric exercises (e.g., trampolines, scooters, push-ups) as these can damage muscles.
At night
Night-time ankle splints may be recommended to keep muscles stretched while your child sleeps.
Nutrition and steroid development
Nutrition plays a big role in managing Duchenne. Steroids, which are often started around age 4–5, help slow muscle damage but can increase appetite and affect bone health.
Balanced diet
Focus on lean protein, fruits, vegetables, and whole grains.
Weight monitoring
Excess weight makes movement harder and increases health risks. Regular checks every 6 months are recommended
Balanced diet
Focus on lean protein, fruits, vegetables, and whole grains.
Low glycemic index foods
These help manage blood sugar and reduce insulin resistance linked to steroid use.
Emotional and social wellbeing
Living with Duchenne affects the whole family. Children may experience anxiety or frustration, and parents often feel stress and grief. Support is available:
Counselling
Ask your clinic about psychological services or counselling.
Assessments
Neuropsychological assessments can help identify learning or attention difficulties early.
Peer support
Connect with community and peer support groups —sharing experiences helps reduce isolation.
Home and school
As mobility changes, small adjustments at home can make life easier:
- Remove trip hazards and consider handrails for stairs
- Use a pushchair or wheelchair for longer outings to conserve energy
- Occupational therapists can advise on supportive seating and equipment
Education is a big part of your child’s life. Work closely with teachers and the Special Educational Needs Coordinator (SENCO) to create a supportive environment:
- Share Duchenne Care UK's guidance for those working in education with staff
- Discuss an Education Health Care Plan (EHCP) if you live in England, or equivalent support plans elsewhere
- Plan for adapted PE and safe participation in activities
- Encourage inclusion and social interaction - children with Duchenne thrive when they feel part of the group
Improving Standards of Care
If you're looking for more information about Care, why not read our Guides for Families and for Clinicians.
