On October 14th I am running in the Royal Parks Half Marathon to raise money for the Duchenne Family Support Group:

 https://www.dfsg.org.uk/

The DFSG was founded by my friends Gum and Eva Newnham with a small group of other families in 1987 after their son Idris had been diagnosed with Duchenne Muscular Dystrophy.

Although Idris’s mother Eva had, since Idris was two years old, been asking the doctors why Idris’s physical development was not following a normal pattern and his ability to climb stairs and run were well behind his peers, it was not until he was seven that a simple blood test showed he was affected by Duchenne Muscular Dystrophy, the most severe of the Muscular Dystrophy conditions.

Finding that there was little support for parents bringing up children with Duchenne Muscular Dystrophy, Gum and Eva invited other families attending London Hospitals, where the condition was treated, to join in forming a support group. From these small beginnings the DSFG was founded. Gum and Eva became very involved, with Eva spending several years as secretary. The DFSG helps bring families together for mutual support, sharing of information and experience, and social activities. The aim is to support families in their care of their children. It is not a mainstream, well-known charity, and so funding for it is always a struggle, but it is a vital life-line for families affected by Duchenne Muscular dystrophy, who often feel isolated.The charity produces a quarterly newsletter and maintains a help line operating across the UK as well as organising holidays and social events.

When Idris was a teenager, Gum spent most of their savings on a catamaran, and the whole family sailed to Europe.  They spent a year sailing on rivers, canals, and eventually the Mediterranean, all of them living on Idris’s diet of raw vegetables in solidarity with him.  The family wanted to spend time together in the short time that remained to Idris and to give him a huge adventure. Desmond Wilcox made a documentary about the trip “A voyage for Idris”. Idris died 3 days before his 18th birthday.