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Along with many other complications of Sturge Weber Syndrome Isaac suffers from very unpredictable and what can be dangerous epilepsy. He has drug resistant epilepsy meaning that over the years, maxed out on various medications he still has seizures. Over time It has left him with a lot of dead brain tissue. It is unfortunately a degenerative disease  

This syndrome and it’s associated conditions (glaucoma, visual impairment, learning disabilities, ADHD, Autism) impact greatly on isaacs daily life and the family as a whole, but he is such a happy and friendly little boy despite his battles. He is currently going through the brain surgery process, assessments, scans etc. Unfortunately his healthy half of brain has been affected which makes surgery a bit more tricky. 

We hope and pray that surgery will improve Isaacs quality of life  

Thanks for reading. Please tick gift aid box if you are a U.K. tax payer. 

Love Louise and Isaac xxx

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