Story
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Jessica who is now 11 years old, was first diagnosed with Sturge Weber Syndrome at the age of 3 and a half in 2007. One day she went into daycare as usual, but while there, suffered a tonic clonic seizure. Immediately, she was rushed to hospital as she was unconscious during the seizure, and there she was given emergency medication to prevent further seizures as well as CAT and MRI scans to find the cause. The doctors discovered a calcification on the left occipital lobe of Jessica's brain. Having sent their findings to paediatric neurologist professors, Doctors confirmed that Jessica did, in fact, have Sturge Weber Syndrome. Fortunately, Jessica is part of a small percentage of SWS that do not have a Port-wine stain birthmark. While she was very young, looking after Jessica was not a challenge, all we had to do was monitor her. But things changed in 2012, Jessica had another huge seizure, lasting about an hour, which doctors struggled to bring under control. They increased her dosages, and we started to monitor her more closely. This prolonged seizures has caused a bit of damage to her brain and as a result she now really struggles with maths,and it has since been confirmed that she has hemianopia (loss of half of the visual field). Jessica is one of the lucky ones as she only has type 3 SWS, meaning she has less visible symptoms.
To raise money for more research on this disease, myself (Clint), Phil Sapey, Dave Batten, Tom HopeGill, Matt Sedgwick, Doug Lacoss, Benoit Lacoss, Richard Brown, Dave McKee and Steve Wigginton will be doing the 3 Peaks in 24 hours challenge to raise fund for Sturge Weber UK.
Please help us to raise funds for others less fortunate than Jessica who have type 1 or 2 SWS. They have more permanent brain damage, are often physically disabled, and have port wine stains over their face and body.
All donations will go to Sturge Weber UK who is a volunteer run support group for families and adult sufferers affected by Sturge-Weber syndrome, a rare neurological disorder.
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