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I have a granddaughter named Halette (Hallie), she has recently been diagnosed with Sturge-Weber Syndrome. This is her story as told by her Mum.

After a short labour on 15 May 2012, baby Halette Nicole came into the world, cried briefly and went quiet. She weighed 6 lb 1 oz. They brought Hallie over to say hello to me. I noticed the dark purple patches on her face and neck and asked what it was. The nurses told me that she probably had congestion or it was a birthmark. I was relieved as I thought she had been starved of oxygen which had made her go purple.

It wasn't until the next morning that the Consultant Neonatologist came to visit me in my room where I was staying with Hallie in a cot next to me and told me it was in fact a vascular birthmark - a Port Wine Stain and that she may have Sturge Weber Syndrome.

Since Hallie was born she has been seen by a dermatologist, neurologist, ophthalmologist, respiratory and ENT consultants and laser surgeons. She has recently had an MRI scan on her brain which has confirmed a diagnosis of Sturge Weber Syndrome.

We know it may be a difficult future full of hospital appointments and treatments and as a family we all want to help raise money and awareness for Sturge Weber Syndrome.

Hallie has been referred to the only specialist Sturge Weber clinic in the UK at Great Ormond Street Hospital and it is for this reason that Hallie's Grandad has chosen Great Ormond Street as his charity.

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