I feel it’s time to get some help and support as we tackle the next phase “post diagnosis”. How do we start future proofing the home? How can I make Cormac’s schooling as inclusive as possible? When should we consider preventative heart medication? - Gary Fegan (Parent & Trustee)

Duchenne muscular dystrophy is a rare condition, and many people haven't heard of it before. Your child may have never met another person living with Duchenne.

Hear a story of hope from Nisha and Rob Laid as they share their Duchenne journey.

The needs of children with Duchenne are complex. At this stage, you may be thinking about;

  • choosing the right school

  • applying for an Education, Health and Care Plan (EHCP)

  • talking to your child or their sibling about Duchenne

  • adapting your home

  • getting their first wheelchair

  • starting heart medication

  • getting fitted for night splints.

Wherever you are, whatever stage of the journey you are at. We are here. You are not alone.

If you are looking for someone to talk to who knows what Duchenne is, half our team are Duchenne parents, we are here to listen, share our experiences and offer support. Please call 020 8556 9955.

Our Community Fundraising Officers Helen and Sam (a fellow parent of a junior living with Duchenne) have been into many schools to speak to children of all different ages. 

Contact us to arrange for us to visit your child's school.  We will work with you to plan the visit and make sure you feel comfortable through the process.

Together as families with organisations like Action Duchenne our lives are being improved. - Levi de Bilde (Parent)

Take action