My Story

Thank you for visiting my London Marathon fundraising page. 

I am happy to be able to run for the Duchenne Family Support Group (DFSG). We were fortunate to holiday in Cornwall at the Disabled Sailing Trust last year.

The DFSG help families with Duchenne in the following ways:

• Subsidising holidays for families. They find accessible accommodation so families can stay together as a group, get to know each other, relax and have fun!
• Organising day trips to attractions in the UK.
• Connecting families who are close to each other, so they can form local networks for mutual support and friendship.
• Providing a free helpline for families in need of some extra support.

Duchenne Muscular Dystrophy (DMD) is a progressive, muscle wasting, genetic condition affecting mainly boys although a small number of girls also have DMD. It is caused by an error in the gene which creates an important muscle protein called dystrophin. Without dystrophin, muscle cells become weaker and eventually stop working.

Most children with DMD show no physical signs at birth, but show signs of muscle weakness by about three to four years of age. Running, hopping, jumping and climbing become difficult and it becomes harder to walk as more muscle cells are lost. 

Children usually lose the ability to walk and begin to use a powered wheelchair between the ages of nine and twelve. Some, but not all, children with Duchenne also have learning difficulties or autism. Everyone with DMD is an individual, so the condition will not progress at the same rate for all children.

At present there is, unfortunately, no cure for DMD. However, research into treatments and cures is making good progress. Very importantly, the quality of life and lifespan of people with Duchenne are both improving all the time.