Child stroke project celebrates its second anniversary helping young stroke survivors

The Stroke Association’s Child Stroke Project is celebrating its second anniversary, providing vital support to child stroke survivors and their families across the UK.

Childhood stroke affects around five out of every 100,000 children a year in the UK. The Child Stroke Project offers information, advice, and support for children, young people and families affected by stroke in childhood.

In past two years the project, which is based at Evelina London Children’s Hospital, has seen over 140 families being referred for support. It has also given information and advice to over 75 parents, health, social care, educational, and voluntary sector professionals.

Anna Panton, Child Stroke Project Manager at the Stroke Association said: “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 a collaboration between the Stroke Association and Evelina London Children's Hospital, funded by an ICAP Charity Day, to be there for children, young people, and their families following stroke.”

One family that has been helped by the project is Dee and Nick Ashby from Strood. When Dee gave birth to her fourth child in September 2012, both her and her husband Nick didn’t realise how much life would dramatically change in a moment.

Freddie had a stroke around the time of his birth and as he grew up, his family noticed difficulties with his mobility, balance, and movement on the right hand side of his body. In 2013 Freddie was referred to the Evelina London Children’s Hospital and the Stroke Association’s Child Stroke Project for further support and guidance.

Today on the projects second anniversary, Dee and Nick are paying thanks to the project for helping them through a very difficult time. Dee said: ““We couldn’t believe what we were hearing the day we were told Freddie had a stroke. As new parents, we really under estimated just how much of an impact this will have on us all. Travelling from hospital to hospital, we felt scared and worried about Freddie all the time – this was until the day we met Anna.

Anna was an absolute rock to the family; she supported us on doctor appointments, advice, information, explaining and clarifying everything, and even travelling to meet us at home. We owe so much to Anna for her support; her help through this difficult time has been absolute lifeline to us all. I now have the confidence to ask questions, understand more about Freddie’s stroke, and most importantly share my experiences with other families thanks to the groups that Anna has signposted us to. When your child has a stroke it’s the most frightening thing you can imagine, but I really don’t think we’d be where we are today without the help from the Stroke Association’s Child Stroke Project and the Evelina Children’s Hospital.”

Anne Gordon, consultant occupational therapist at Evelina London Children's Hospital, says: "Freddie's responding really well to therapy and is making excellent progress.

"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. Because children grow at such a rapid rate their bodies and brains are constantly changing and so are their care needs.

"The Child Stroke Project is proving really successful in arranging this on-going, 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."

For more information about the Stroke Association’s Child Stroke Project, please visit www.stroke.org.uk/childhood or call our helpline on 0303 303 3100.