Randall Steer

Supporting Yasmin !

Fundraising for Sturge Weber UK
£3,348
raised
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Event: Bupa Great Manchester Run 2011, on 15 May 2011
Sturge Weber UK

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RCN 1016688
We provide information & raise awareness to support families and children with SWS

Story

 

 
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.
Please click on the Surge Weber Foundation link on this page to read more details and other factors involved with this rare condition!

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About the charity

Sturge Weber UK

Verified by JustGiving

RCN 1016688
Sturge Weber UK is a volunteer run support group for families and adult sufferers affected by Sturge-Weber syndrome, a rare neurological disorder. A registered charity, it was launched in 1990 as a independent group by the disability support organisation Contact a Family. www.sturgeweber.org.uk

Donation summary

Total raised
£3,347.99
+ £599.50 Gift Aid
Online donations
£2,847.99
Offline donations
£500.00

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