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We are taking part in this event to raise awareness for Sturge Weber Syndrome, here is our story :

It all started back in 2003 when our daughter Kloise was born with a Birthmark on her scalp, face, neck and ears. This later became to light that is was a port wine stain. We were informed their was a possibility she could have laser treatment to lesson the PWS. After 6 treatments, the laser started to cause scarring so we had to cease all laser treatments until a later date. At the age of 3 after routine eye check, we were informed their was a problem with her left eye. We were sent for further tests which proved Kloise had glaucoma due to the port wine stain, and as a result wears glasses to help with her vision. She has regular quarterly check ups which include photos behind her eye, drops, pressure tests and eye tests. Kloise has eye drops in her left eye daily, to maintain the pressures in her eye. We take Kloise yearly to see the neurologist for check up and reviews after scans on her brain revealed a pool of fluid was present. 

When visiting our local Health Surgery, out of 12 doctors only 1 was familiar with the Port Wine Stain, however it wasnt until we saw the neurologist that is became known Kloise did actually have the condition Sturge Weber Syndrome. We were never informed or advised of Sturge Weber Syndrome. Luckily Kloise has not suffered any seizures or learning difficulties, however this has to be monitored.  Our local health surgery are still unable to answer any questions we have, and we have to be referred to other hospitals to get our answers. If we can raise awareness hopefully more health surgeries will be aware this problem exists and can help and advise future children who suffer from this condition.

Kloise is a confident young girl and does not let her on going problems affect her daily life. She has learnt to ignore the glances and comments, however she does find some of the comments upsetting, but she can also find some on the funny side.

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