Childhood stroke resources

Our childhood stroke handbook explains to children what happens when they have a stroke, and it also has advice for parents.

We have developed four videos to illustrate the content of the childhood stroke handbook - thanks to the support of the Childwick Trust.  Watch our video 'What is a stroke?' below, and find more videos on 'What happens when you have a stroke?', 'Getting better after having a stroke' and 'Talking about having a stroke' in the Childhood Stroke Playlist on our YouTube channel.

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 childhood@stroke.org.uk or you can download your copy now.

You'll find additional links to organisations below, whom can offer further support and information related to childhood stroke.

Stroke, brain injury and hemiplegia organisations

• My Child had A Stroke – a Facebook group led by parents of children who have had a stroke. The group has over 800 members who share experiences and offer one another vital peer support.
• 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 – a 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 which 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.
• CHASA – an American site providing a range of information and resources about stroke and hemiplegia that affects childhood.
• 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.
• Different Strokes – an organisation which supports younger people affected by stroke, and has a resource page for stroke survivors from ages 13 – 25.
• Strokidz – an Australian site providing a range of information and resources on stroke in childhood.

Family organisations

• Contact – an organisation which supports the families of children with disabilities. They also provide a helpful guide for families which puts all the information in one place and helps explain jargon and job titles. Families can order a free copy of the guide on this page.
• Scope – an organisation which supports the families of children with disabilities. Provides a range of services and information.
• Young Sibs – an organisation which 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 which offers legal advice, support, and training for parents around Special Educational Needs.
• Council for Disabled Children – a national umbrella body which brings together a diverse range of organisations that work with and for disabled children, to support the development and implementation of policy and practice.
• SOS!SEN - an organisation which offers information and advice on special educational needs and disability through a national helpline and local walk-in SEN advice centres. 
• Statutory guidance on supporting children at school with medical conditions – includes examples of care plans.

Financial support and grant giving organizations 

• The Stroke Association provides information on benefits and financial assistance.  
• Cerebra offer a specific guide to applying for DLA, and Contact offers a benefits check via their helpline.
• Turn2Us, Sky Badger and Disability Grants offer search functions so you can look through a range of grant providers.
• Organisations which offer grants to young people affected by stroke, brain injury and disability include Family Fund, the Child Brain Injury Trust and the Roald Dahl Charity.
• Young people considering study in further education settings may be interested in the Disabled Students Allowance, and those interested in learning to drive may be interested in the Motability Charity and Scheme.
• Carers UK - information on carer support and benefits, including criteria for applying for carers allowance, and to find local support.

Related conditions

• Sickle Cell and Young Stroke Survivors and Sickle Cell Society – organisations which 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 which provide tailored information about epilepsy for children and young people.
• Cardiac risk in the young and the British Heart Foundation – organisations which 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.
• The International Alliance for Pediatric Stroke has a range of resources and publications about childhood stroke.

Video resources

• A Stroke Can Happen at Any Age by the International Alliance for Pediatric Stroke is a video made 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, which 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.