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Unique child stroke service celebrates second birthday

Posted on Friday 14th August 2015
Emily Burgess, patient of the Child Stroke Project, with her brothers Peter and Thomas

Emily with her brothers Peter and Thomas.

Emily Burgess was only three-years-old when she had a stroke. She was sitting at home in Eltham, south east London, when she suddenly turned to her mum Virginia to complain that her arm hurt.

At first it did not seem to be a serious problem. Virginia gave Emily some medicine and a cuddle in the hope this would make her feel better, but it soon became apparent that Emily was struggling to walk.

Virginia took her daughter to her local A&E but doctors were not sure what had happened to Emily and so she was referred to Evelina London Children's Hospital where specialists diagnosed that she had suffered a stroke.

Emily had her stroke in August 2013 when the Child Stroke Project, a unique collaboration between Evelina London and the Stroke Association, had just started.

Today it has helped more than 140 families and it remains the UK’s only specialist support service for children and families affected by childhood stroke. Childhood stroke can be very difficult to recognise and the experts at Evelina London provide assistance to families and healthcare workers all over the country when children may have had a stroke.

Emily’s mother, Virginia Burgess, says: "I was completely shocked when I was told the news. I hadn't even realised that children could have strokes.

"Emily spent nine days in Evelina London. It was a bewildering time for her – she had never slept apart from her twin brother Peter before and she was also having to get used to the fact that she couldn't use her right arm.

"Luckily Emily made amazing progress while staying at Evelina London. She responded really well to the care and treatment and was able to come home again. She was wobbly on her feet and still didn’t have full use of her right arm and hand, but she was really pleased to be back with her brothers."

Anna Panton, child stroke project manager at the Stroke Association who works as part of the Evelina London team, says: “Many people think strokes only happen to older people, so a stroke in a baby or child can come as a big shock. In fact, around 400 childhood strokes occur in the UK each year – that’s more than one a day. 

“Families often don’t know where to turn for information and support. The Child Stroke Project is here for children, young people, and their families.”

After Emily left Evelina London, Anna stayed in regular contact with her family to check how Emily was adapting and to provide advice. Anna later went to Emily's new school to explain how she had been affected by her stroke and how she could best be supported.

Emily still sees a neurologist at Evelina London every six months. She also takes an aspirin every day, and is likely to continue doing so throughout her life. She is, however, healthy and happy and able to participate in everyday activities alongside her brothers and school friends. Although she regained use of her right arm, she has become left-handed.

Virginia says: "It was a great help to have ongoing care and support from Anna and the team. They've made the whole process less frightening. I can ask them any questions I like and they've put in place the arrangements to make sure that Emily can still live a normal life, despite what happened to her."

Anne Gordon, consultant occupational therapist at Evelina London Children's Hospital, says: "Childhood stroke is a rare occurrence but very serious for the child and their family. Children need specialist care to help them recover and to adapt to the effects of stroke. Children grow at a rapid rate, which means their bodies and brains are constantly changing and so are their care needs.

"The Child Stroke Project is proving really successful in arranging this ongoing, specialist support and is making a real difference to the lives of our young patients. There's nothing more satisfying than seeing a child who's had a stroke learning to adapt and going on to reach their full potential."

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