Manchester Great Run

Manchester Great Run
15th May 10.30 - 12.30

We are raising money and awareness for Sturge Weber Syndrome and this is why..............................

On the 28th March 2008 Mum(Nicola) and Dad(Rick) went to hospital, and our twins Alfie and Yasmin Murray were born into this world by caesarean section,they have two older brothers called Benjamin and Harvey.

Shortly after her birth we noticed that Yasmin had a red mark on the left side of her face,here is a brief story of the life so far of our precious little girl.

Sturge-Weber syndrome is a rare condition which effects about 1 in 50,000 people,in which the presence of a birthmark (port wine stain), usually on one side of the face, is associated with an abnormality of the brain caused by abnormal blood vessels on the surface of the brain. This abnormality usually results in epileptic seizure.

Shortly after Yasmins 1st birthday the seizues started which resulted in her being rushed into hospital and spent the next 7 days in high dependancy whith the doctors struggling to control the seizures.

Yasmin spent the next 4 months seizure free but the doctors warned that the seizures would come back, and they did, in September 09 they started and from then till the present day we have estimated that Yasmin has had over 20,000 seizures,and with the specialists best efforts the seizures are showing no signs of stopping,with several different types of seizures appearing, because of this Yasmin was put forward for an operation called a functional hemispherectomy,which basically means disconnecting the affected half of her brain, but as yet the specialists cannot find the focal point of the seizures,so any chance of surgery helping could be a long way off.

Richard Murray

To sponsor Richard please click on the link to go to the Just Giving page - Thank you.