Stroke: Sofia-Rose

Published: January 2020. Date of brain injury: February 2014 (at birth).

Sofia-Rose suffered a large stroke at birth in 2014. She suffered multiple seizures and was placed on life support. We were told that she may not make it and had her baptised in hospital.

After three weeks we were given the devastating news she had suffered a stroke and may not be able to walk or talk.

When I was first given the news I felt like my whole world had ended and I could not accept what had happened at first.

I decided I wanted to give my little girl a fighting chance and spent every hour I could pumping breast milk at her bedside that she was tube fed. I was very traumatised by what happened to Sofia and still suffer from PTSD as a result. However, I have found courage in sharing Sofia’s story and spreading awareness of childhood stroke.

Looking for support

I didn’t feel that I was supported at all; I didn’t even realise children had strokes. When we took Sofia home we were given no support or information pack. I had to research it all myself. When people hear Sofia’s story it is always met with shock and disbelief – not many people know about childhood stroke. 

Unfortunately, at six months old Sofia developed West syndrome (infantile spasms) and spent three weeks at Alder Hey Hospital whilst they tried to bring it under control.

The support at Alder Hey during Sofia’s stay with West syndrome was great as there were neurologists to explain and most importantly they told me to stop searching on google! This was something I’d done obsessively as I had no information.

Life today

Sofia is nearly six years old. She has both physical and mental challenges as a result of her brain injury. We wanted to give Sofia the best fighting chance so enrolled her in mainstream primary school. She suffers from fatigue, constant falls, issues with regulating emotions, mobility issues and her visual impairment makes it hard for her to see and affects her work. She needs a lot of encouragement and specialist support, which is done through positive praise and working in Sofia’s determination to succeed.

Sofia-Rose is an absolute inspiration. She gives everything 100% with a smile on her face. She has featured in our local press a few times and has just won the Child of the Year Award for her resilience and charity work. She faces many challenges and lots more operations, for example, double eye operation, Botox, tendon transfers.

Looking ahead

Sofia faces many more operations in the future which we will face as a family. She is a very beautiful girly girl and gets so many comments on her looks. She loves fashion and wants to be a model and a dentist when she grows up! We will support her in everything she does and with her recent publicity she is keen to keep spreading awareness for others like her.

My advice to other parents

Never give up! Yes, you will have days where you feel like giving up but you will also have days where you sit back and realise how amazing your child is. Also you are never alone.

Sofia-Rose received help from The Stroke Association and CBIT. The Children’s Trust’s Brain Injury Community Service supports children and young people in their own environment who have a confirmed or suspected diagnosis of an acquired brain injury (click link above for more information).