What is Action for Brain Injury Week?
Each year, Headway – the brain injury association leads Action for Brain Injury Week (ABI Week), a national campaign raising awareness of acquired brain injury and its life-changing impact.
This year’s theme, isolation, shines a light on something many families experience but few talk about, the quiet, ongoing loneliness that can follow a brain injury long after the visible signs have faded.
As proud supporters of ABI Week, the Child Brain Injury Trust is sharing real stories from families to help others feel seen, understood, and less alone.
The following blog is written by our Corporate Fundraising Manager, Emma Pilling, whose son Charlie, aged 8, has a brain injury. Charlie has Hydrocephalus, a condition where there is a build-up of fluid on the brain. This fluid puts pressure on the brain and can affect development, behaviour, and everyday functioning. In some cases, hydrocephalus can result in a brain injury, although this is not always the case. For many families, it is a lifelong condition that requires ongoing monitoring, treatment, and support.
When the World Sees, and When It Doesn’t
The entrance into the world of acquired brain injury is traumatic, but it is also visible. It is usually accompanied by hospital stays and neurosurgery.
Those surrounding you can understand that this is a crisis. They know it will be hard. They can see bandages, hospital beds, they can sense distress.
During this crisis, people stand beside you. They check in. They care.
When you leave the hospital, when the scars heal and the bandages come off, those messages start to slow.
Not because people have forgotten, but because often, they don’t know what to say. It’s painful and it is too close to the hearts of so many. Often, your child reminds them of the fragility of their own. It brings fear and emotions they do not want to face.
You lose your words. You don’t know what to say. You see the pain in their eyes, the discomfort at your honesty.
The Quiet Reality of Isolation
Your life slowly becomes a carousel of hospital appointments and complexities, and few can understand.
You try to explain what you are facing to employers. You seek understanding, but when the disability is largely invisible, the grasp of its severity can be hard to find.
You find yourself apologising, feeling dramatic, simply trying to survive.
The world around you is unchanged, but you have changed. Your child has changed. And you feel alone in this new reality.
Peer groups and friends are on a different path. You find it hard to see their children develop differently, to see them living in a reality you expected to have, a reality you crave, a reality you mourn.
Your social groups shrink. Your world becomes smaller. When you are alone, you feel the tears fall, the pain can consume you.
You feel the distance from friends and family alike. You fight for education. You fight for inclusion. You fear for your child’s seemingly lost place in the world around them.
The isolation is consuming. The invites become fewer and, in some ways, you are sad, and in others you are relieved. You can feel you don’t fit. You try to make it work, but all you feel is sadness and all you see is difference.
Finding Hope Through Understanding
Then, amid all of this confusion and emotion, you find hope.
Your panic and your will to make things better lead you to a charity. A charity that understands. A place that does not flinch at your words, that understands your pain, that makes you feel seen.
This hope brings change. Your audience shifts, but your voice is no longer lost.
You learn the stories of others. You applaud their successes and support their difficulties. You find a community.
That community stands with you. They see the potential in your child. They advocate for them. They make a difference.
And suddenly, that darkness begins to lift. The light starts to spread. Because of them, others begin to see the beauty in your child and the struggles you have faced.
Rebuilding After Isolation
The isolation of childhood acquired brain injury can consume you. It can rob you of your joy. It can change your entire experience of parenthood.
I often feel sadness for the time I lost, consumed by that sadness and simply trying to cope.
The Child Brain Injury Trust changed my life. They shone a light in a way nobody else had been able to do. They helped me to chase happiness, to understand that different is not bad.
Their knowledge and positivity have allowed me to rebuild, to stand tall, to use my voice, to no longer allow the feelings of others to silence me.
A Message to Other Families
This journey will be unsettling. It will change everything. That will be scary and isolating.
But please know that there is understanding in the world, and with the right people beside you, magic can truly happen.
You may have lost your old place in the world around you, but your new place is still valid. Your child deserves to have their potential supported. They deserve an education that meets their needs. They deserve to dream and be ambitious.
This is not the life you would have chosen, but you are not alone. With the right people beside you, brighter days will come. The laughter will fill the air once more, and you will see sights you never could have imagined.
Every diversion leads to a destination, and this is not a journey you should ever take alone.
Holding Onto Hope
I know if I could tell the version of me from eight years ago what this time would be like, she would struggle to believe it.
It is hard. But the support I have found within the CBIT community has taught me to never give up, to always have hope, to speak honestly, and most importantly, to share that compassion with others.
About the Child Brain Injury Trust
The Child Brain Injury Trust is the UK’s leading charity supporting children and young people with acquired brain injuries, and the families who care for them. We provide non-clinical, holistic support from the point of injury through to long-term recovery, helping families navigate the emotional, practical, and educational challenges that can follow.
Through our dedicated team of ABI Coordinators, we offer early intervention, community-based and virtual support, and specialist training for professionals working with children. We work alongside families, schools, healthcare providers, and wider networks to ensure every child is understood, supported, and given the opportunity to thrive. Learn more here.