Rebecca’s son, Jacob, had a stroke before he was born. Here, Rebecca shares her experiences and advice for parents of childhood stroke survivors, and families of all ages living with the lasting impact of stroke:

“Initially after his birth, Jacob seemed fine. Then he stopped breathing twice and started having seizures. It was terrifying.

“We were told Jacob had had a stroke and might not ever walk or talk. The medical staff stressed that, at Jacob’s age, the brain can rapidly repair itself and that his outcome could be much better. But although the words were going in, I felt like I was watching from outside my body.

“Jacob is now nine. He is so funny and loving - he brings light to any room! He walks, but it came slowly and not without its hurdles. New challenges are always coming our way. We struggle with behaviour problems and he’s been held behind at school. But we wouldn’t change Jacob for the world.

Childhood stroke survivor, Jacob, smiling.
Childhood stroke survivor, Jacob.

“Jacob doesn’t fully understand what happened to him. He knows his brain is “poorly” and we must work with him to make it better. He is always eager to try, and we couldn’t be prouder of him.

“We go through periods of progress and stagnation. This can feel daunting, but it's important to look at where you started and see where you are now. All progress is a huge step forward.

“My perspective has also shifted. At the start, I felt lost - like time was sealed and his whole life was determined by the stroke. But that isn't true. Life has so many twists and turns and it's important to have hope. Although Jacob could end up needing care for life, I’m more hopeful for the journey ahead.

“Remember that your journey is your journey, no two are the same. Where you are now may not be where you are in a year.

“As a parent or a carer, look after and make time for yourself. Therapy can also be very beneficial - it made the world of difference for me.

“And find people who will support you. It’s not a journey you can face alone. It can take you to breaking point. Please find someone to listen to you, as you’ll need them in your times of doubt and anxiety.

“I love that the Stroke Association has a dedicated childhood stroke support team and Parent-to-Parent support, so people can find someone they can relate to. These services will be so beneficial for many. I know they would have been for me.”

Find out more

We’re here to help children and families to live their best possible lives after stroke. Visit our childhood stroke pages to see our services and resources, including our new Parent-to-Parent volunteer calls.

If you care for a stroke survivor of any age and need support, please call our Stroke Helpline on 0303 3033 100.

Stroke News magazine

This article is featured in the winter 2023 edition of our magazine, Stroke News. Subscribe to our future editions available in print, on audio CD, or via email.