Our son Ben was born in 2008 all went well and he grew into a lovely little bubbly boy around 18 months old we started to notice he seemed to go off in his own world a lot. Pick at his clothes etc When he was three on the 28th August 2010 Ben had a Grand Mal Seizure which clustered and lasted 40 minutes in total. The Hospital did a ct scan and found a calcified lesion. Ben was referred to the Bristol Paediatric Nuerology team. Ben had an Mri which suggested Sturge weber Syndrome, So they suggested removing the Lesion for Biopsy. Ben had Nuero-surgery at the End of October. Since August Bens seizures have got progressivly worse and he takes medicine every day. Ben has 10 - 15 seizures  daily. His last Big seizure affected his right side and left him unable to walk for Days. Every little seizure since also affects his walking and right-sided movement. Although Ben has this Condition he is a very happy,bright and brave boy. Ben has type three meaning he does not have the Port wine stain. This condition affects 1 in 50,000. Sturge–Weber syndrome is manifested at birth by seizures accompanied by a large port-wine stain birthmark on the forehead and upper eyelid of one side of the face. The birthmark can vary in color from light pink to deep purple and is caused by an overabundance of capillariesaround the ophthalmic branch of the trigeminal nerve, just under the surface of the face. There is also malformation of blood vessels in the pia mater overlying the brain on the same side of the head as the birthmark. This causes calcification of tissue and loss of nerve cells in thecerebral cortex. Neurological symptoms include seizures that begin in infancy and may worsen with age. Convulsions usually happen on the side of the body opposite the birthmark and vary in severity. There may be muscle weakness on the same side. Some children will have developmental delays and mental retardation; about 50% will have glaucoma (optic neuropathy often associated with increased intraocular pressure), which can be present at birth or develop later. Increased pressure within the eye can cause the eyeball to enlarge and bulge out of its socket (buphthalmos). Sturge–Weber syndrome rarely affects other body organs. So please give Generously to help this small charity doing Big work for the familys and children affected by this condition.