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I am running the 2019 Virgin London Marathon for Stickler Syndrome UK, a charity that seeks to raise awareness of a little-known hereditary, genetic condition that can cause cleft palates, retinal detachment, hearing loss and joint problems. Stickler Syndrome can be difficult to diagnose as the symptoms may vary and are often treated by individual specialists. 

April 2019 is also very significant for me. It would have been my daughter Hannah’s 10th birthday. After many antenatal examinations, a Fetal MRI, amniocentesis and numerous scans we knew Hannah had growth retardation and fluid build up in her brain but did not know why. The situation was complicated further by the fact I was also carrying her twin sister who appeared to be developing normally. Despite all our efforts to find a reason and a treatment, including travelling to Kings College Hospital in London, Hannah was stillborn. Annie is fortunately thriving and we remember her twin sister everyday. We were unable to get a definitive diagnosis for Hannah or to understand why she died, and I am proud to be running the marathon for a charity that seeks to support and raise awareness of a genetic condition that is currently grossly under-diagnosed in the UK. 

Thank you for reading and for your support.

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