Alex

Alex was diagnosed with Duchenne muscular dystrophy (DMD) at two years of age. DMD is a rare, genetic disorder that affects about one in 3,500 boys born around the world.

The disease prevents the protein Dystrophin being produced in muscle cells. Dystrophin acts as the ‘glue’ that holds muscle cells together. Without it, muscles cannot work properly and start to deteriorate.

DMD is usually diagnosed between the ages of two and five and is first characterised by muscle weakness, usually in the legs, which spreads to the arms, neck and other areas.

Alex’s mum Claudia became concerned when he still wasn’t walking at two years, so she took Alex to a paediatrician who diagnosed DMD after a blood test and muscle biopsy.

Now 16, Alex has been in a wheelchair since the start of 2015 and enjoys playing with his iPad and PlayStation. He is currently studying year 11 at school and has an annual check-up with the neurosciences team.

There is no cure for DMD yet but scientists around the world are working hard to find one.

For more information, see www.duchennefoundation.org.au

7 September is World Duchenne Day.