Rosie's Story

Rosie was born prematurely at just 28 weeks and three days, while we were away from home, visiting relatives in Southampton.  Those first few months were a very scary time. After a few days on the neonatal ward in Southampton and delays due to stormy weather, we travelled back to North Wales via helicopter due to Rosie’s fragility.

Rosie was then taken ill with meningitis which was treated with an extensive period of antibiotics. Unfortunately, the meningitis resulted in hearing loss and fluid on the brain which required surgery to place a shunt in her brain. But after five months in five different hospitals, we were finally able to bring Rosie home.

We first heard about Cerebral Palsy Cymru through our local physiotherapist, who mentioned that they worked with children at risk of cerebral palsy, even without a formal diagnosis. And after a lot of research, we realised that Rosie was very likely to have cerebral palsy and made a self-referral to their early intervention programme, Better Start, Better Future.

We had an initial online session and then travelled to Cardiff for our first in person therapy session. Even waiting in reception, we could see other families who were in similar situations, and we felt a sort of sense of belonging. We just felt less alone.

The team at Cerebral Palsy Cymru took the time to truly get to know Rosie, not just her medical needs but also her personality, her likes and dislikes. We felt really supported and cared for. Up until then, our experiences had been very clinical, dominated by discussions about medical interventions. But at Cerebral Palsy Cymru, the approach felt more human, more personal.

Having Natasha (Cerebral Palsy Cymru’s Family Support Coordinator) join our therapy sessions was also really useful, especially as she is a parent to a child with cerebral palsy, it just made sense.

Better Start, Better Future has given us a much better understanding of cerebral palsy, and how we can best help and support Rosie. Our continued outreach sessions in North Wales, provided by Cerebral Palsy Cymru, have been really useful. Alongside our local weekly physio, these sessions have given us the strength and the energy to keep going and keep doing the exercises. The team are real specialists and have given us structure to work with and guide us.

Without Cerebral Palsy Cymru, there wouldn’t be any early intervention at all. There is a lack of support out there for families with cerebral palsy, so we just feel so lucky to have access to a service like this.

There’s a lot of uncertainty when you first find out your child has cerebral palsy, especially in the early days when you don’t know what’s going to happen. It can be a tough thing psychologically for parents, and quite isolating. Getting support from Cerebral Palsy Cymru has helped us have hope and to feel that we’re not alone.