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Stephen, the middle child of seven was born in August 1963. He was born with a red (port wine) birthmark covering his face and half his body. Growing up Stephen suffered with migraines, seizures, numbness to the left side of his body and had issues with his eyesight. I vaguely remember Mum and Dad making regular trips with Stephen to the John Radcliffe Hospital in Oxford looking for answers to these issues. I recall his condition being linked to his birthmark but I do not think he was ever given a proper diagnosis. Stephen did his best to carry on as normal. In hindsight he did very well to do so, it would not have been easy.

Sadly Stephen suffered a massive stroke on 15th February 2021 and passed away peacefully a couple of days later with his brothers and sisters by his side.

Although we do not believe it had anything to do with Stephen's death it was confirmed that he did have Sturge Weber Syndrome. Despite our loss and immense grief we finally had an answer to our many years of wondering. 

I never researched the condition until the day Stephen was taken ill. It soon became clear to me that Stephen did have many of the symptoms and personality traits associated with Sturge Weber Syndrome. 

Despite their best efforts our parents were not able to get a diagnosis along with help and support for Stephen. It is for this reason we have requested donations in Stephen's memory go to Sturge Weber UK. There are families out there going through what my Mum & Dad went through 50 years ago. Not forgetting children like Stephen who are suffering with an extremely rare condition. Our heart goes out to them all. 

Despite his condition Stephen was able to become an organ donor. We have been told a man in his twenties has been given a life changing transplant. We are extremely proud that Stephen has been able to help others through the gift of organ donation.

Many thanks in advance for your support, Brian, Gary, David, Debbie, Helen & Andrew xx

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