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On the 29th May I am riding the London 100, (100 miles  in the saddle, through the heart of London and neighbouring Essex) and raising awareness of Goldenhar Syndrome.

You may or may not be aware Joshua was born with Goldenhar Syndrome. 

Goldenhar Syndrome is an ‘umbrella’ term for a wide range of bone abnormalities affecting the face and sometimes the vertebrae. It has been proven not to be genetic.

Goldenhar Syndrome was identified in 1952 by Dr. Maurice Goldenhar (hence the name), an ophthalmologist, who wrote a number of articles about facial problems that tend to occur together. Often in hospitals it is referred to as Hemifacial Microsomia (or Complex Hemifacial Microsomia).

No one yet knows why Goldenhar Syndrome happens and doctors will call it ‘sporadic’ (unknown cause). Children with Goldenhar Syndrome are usually of normal intelligence and live normal life spans. We do know that a baby’s face develops during the 8th to 12th week of pregnancy by several types of tissue growing together and meeting, at the same time, to form facial features. The tissues that become the face and jaw start separate from the upper part of the face. In Goldenhar Syndrome, something goes wrong with this meeting. It is not yet known why or how.

Goldenhar UK is an invaluable charity that provides information and support services to those living with Goldenhar Syndrome and their families.

We have been supported by the charity since Joshua’s birth and now have links with other families. I would love to give something back to the charity and to help raise awareness of this rare condition.

Joshua is thriving because of the support he has and as parents we have the information we need to support Joshua daily, from physical challenges to overall well being.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.