On Friday the 4th of March in Oxford an amazing thing happened, we won a Child Brain Injury Trust Diamond Award. We won the “outstanding family award” and we are so humbled to have been chosen. Our son Charlie has a condition called Hydrocephalus which means his body cannot naturally drain the cerebrospinal fluid (CSF) around his brain, this build up of fluid caused an acquired brain injury when Charlie was a baby. Charlie underwent brain surgery at seven months old to fit something called a shunt, this essentially drains the fluid from his brain into his tummy because he can’t do it himself.
The damage to Charlie’s brain has affected every aspect of his development and life is often hard, added to that his shunt could fail at any time and shunt failure can cause outcomes so terrible it makes you sob just to think of it. Every suspected shunt failure is anxiety inducing and it can happen at any time so it’s a very emotional path we’re on. We have faced many obstacles since his surgery and Charlie is truly inspirational in how he approaches life and the challenges around him. We have been supported since he was small by the Child Brain Injury Trust and we have been so grateful for their care and support. A journey like ours is often very lonely and very misunderstood, without the right help you can slowly find yourself drowning. Due to our experiences we decided to raise awareness of his condition and provide support to other families on similar journeys. We set up social media and worked with charities to share Charlie’s journey. We have been lucky to work with “Harry’s Hydrocephalus Awareness Trust” on a book which includes Charlie’s story, this is now given to parents on every paediatric neurosurgery ward and it is also distributed across the world. We are about to be a part of a national poster campaign raising awareness of the importance of head measurements in infants. Due to the work we have done we won the “Outstanding Family Award” at the ceremony on Friday, we were so proud that the Child Brain Injury Trust felt we were helping others.
A note from the judges:
“The judges were deeply moved by this family’s story, their courage in sharing their journey has been a lifeline for many families, not just here in the UK but across the World. Their strength and resilience is truly inspiring, the award goes to the Pilling Family.”
Winning the award was super emotional, I had been emotional all day. We were so proud to win the award and thrilled people felt we were making a difference. What we do is a direct result of the support Cbit has shown us, they were our light in the darkness and they often still are. They showed us the way when we were lost and we want to share some of that care and compassion with others. We wanted to “pay it forward” and we hope we can continue to help and make a difference for years to come.
We met some truly inspirational people on the night and felt honoured to be amongst them. The Child Brain Injury Trust is special, it is human, they care. The impact they have is indescribable, they make the worst times of your life manageable, they say “we’re here” and they really mean it. At the most lonely and isolated points in your life that means more than you can ever fully express.
Thank you Cbit, for all the support, for the award and more importantly for making us so welcome at your celebration. We had an amazing night and Charlie felt like a total rockstar! As I said to Matthew the morning after we have never been anywhere when we have felt so completely accepted and that was such a special thing.
For more information on our journey please visit “About a Boy and Hydrocephalus” on Facebook, Instagram and TikTok
About a Boy and Hydrocephalus 