On 6th April 2025, I will be taking on the huge challenge of running the London Landmarks Half Marathon for a special cause; to raise awareness of Goldenhar syndrome and funds for Goldenhar UK. Thank you so much in advance for donating whatever you can, it really will make a massive difference.

You may or may not be aware that my son, Joshua, was born with Goldenhar syndrome, which 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 differences 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).

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.