Childhood stroke can affect the whole family. Parents often feel a range of emotions, from shock and bewilderment to feelings of isolation and frustration. Other children in the family can be affected by the stroke too. They may not understand what is happening to their brother or sister, which can be upsetting and confusing.
Below are a number of resources relating to childhood stroke. If you require more information, please contact Anna Panton, Childhood Stroke Project Manager, by email: firstname.lastname@example.org.
Childhood stroke resources for young people
Our childhood stroke handbook explains to children what happens when they have a stroke, and also has advice for parents. We've also developed a small medical information card (shown below) for use by childhood stroke survivors. If you'd like a free copy, please contact email@example.com or you can download your copy now.
Watch our video 'What is a stroke', created as part of the Childhood Stroke Project in collaboration with the Evelina London Children's Hospital and thanks to the support of the Childwick Trust.
Childhood stroke resources for parents, carers and professionals
Our childhood stroke guide provides information about the causes of stroke in children, the treatments, and coping with life after childhood stroke. We've also developed a childhood stroke handbook, which explains to children what happens when they have a stroke and also has advice for parents.
Our Childhood Stroke question and answer sheets help inform families of what to ask in different appointment settings following a stroke. These have been developed through working with parents and professionals:
- Questions to ask when your child starts or returns to school.
- Questions to ask at neurology appointments.
- Questions to ask when looking for therapy services or attending therapy appointments.
Our three Childhood Stroke posters raise awareness that stroke happens to children and young people too. Download now:
Other sources of information and resources
You'll find additional links to organisations below, who can offer further support and information related to childhood stroke.
Stroke, brain injury and hemiplegia organisations
- Hemihelp – provides information and support to children and families affected by weakness on one side of the body. They have activity and support groups for parents and siblings and give advice on aids and equipment.
- Brain Injury Hub – website providing in-depth information on childhood brain injuries (including stroke).
- Child Brain Injury Trust – an organisation that supports children, young people and families affected by acquired brain injury. Provides information, advice lines, local services and events.
- Cerebra – an organisation that supports children, young people and families affected by neurological conditions. Provides information, resources and services. Has an Innovation Centre which will customise equipment for children with disabilities.
- Different Strokes – an organisation that supports younger people affected by stroke, and offers an information pack about stroke in children.
- CHASA – an American site providing a range of information and resources on stroke in childhood and hemiplegia.
- International Alliance for Pediatric Stroke – an international site drawing together a range of information and resources on stroke in childhood.
- CPSSA – a Canadian site providing a range of information and resources on stroke in childhood.
- Calgary Pediatric Stroke Program – a Canadian site addressing some of the frequently asked questions about stroke in babies/around the time of birth.
- Strokidz – an Australian site providing a range of information and resources on stroke in childhood.
- Contact – an organisation that supports the families of children with disabilities. Provides a range of services and information.
- Scope – an organisation that supports the families of children with disabilities. Provides a range of services and information.
- Young Sibs – an organisation that supports the siblings of children with disabilities. Provides information, resources and a chat room.
Education and advocacy organisations
- IAS Services – offers information, advice and support for disabled children, young people, parents, and those with special educational needs. You can check here if there is a service in your area.
- IPSEA – an organisation that offers legal advice, support, and training for parents around Special Educational Needs.
- Council for Disabled Children – a national umbrella body that brings together a diverse range of organisations that work with and for disabled children to support the development and implementation of policy and practice.
- Statutory guidance on supporting children at school with medical conditions – includes examples of care plans.
- Sickle Cell and Young Stroke Survivors and Sickle Cell Society – organisations that offer information and support to children, young people and families affected by stroke and sickle cell disease in childhood.
- Epilepsy Action and Young Epilepsy – organisations that provide tailored information about epilepsy for children and young people.
- Cardiac risk in the young and the British Heart Foundation – organisations that provide tailored information about heart conditions in children and young people.
Resources for families and young people
- Acquired Brain Injury in Children: A Parents' Handbook – a comprehensive guide from The Children's Trust
- Me and my brain – a handbook for teenagers with acquired brain injury – a detailed guide from The Children’s Trust designed with input from teenagers living with brain injury
- All about my brain – a book from the Child Brain Injury Trust to help young people understand about brain injury and what strategies might help them
- Heads-up, Tim-Tron – a book for younger readers who'd like to know more about acquired brain injury
- A Stroke Can Happen at Any Age by the International Alliance for Pediatric Stroke is a video to raise awareness that stroke happens to infants, children and even before birth.
- Young stroke survivor, Oli, talks about getting back to life after stroke.
- Lily-Mae had a stroke at the age of 7. Here Lily-Mae's parents speak of their personal experience, and give an account of the problems parents face when dealing with childhood stroke.
- My Way by Hemihelp is an uplifting collection of home-made clips filmed by families and people affected by hemiplegia (weakness down one side of the body, that can sometimes be a consequence of stroke). The aim is to tell the world that hemiplegia doesn't mean living half a life. If we face a challenge then we just find our own way around it.