Life can change in a heartbeat – Ataxia

Life can change in a heartbeat

Life can change in a heartbeat

Post Published: August 11, 2020

We hear from Ataxia UK Media Ambassador, Kate Davenport, about the shock of her daughter’s ataxia diagnosis.

In October 2016 my six-year-old daughter was admitted to hospital out of the blue. In the space of a few days, our world was turned upside down. A headache, some vomiting and dizziness that I dismissed as a sick bug, turned out to be something much more sinister. I spent two weeks by her side in the timeless other-world that is a children’s hospital ward.

It’s all a bit of a blur, but years later there are still moments of sharp clarity that sting to think about; even now. Alarm bells started to ring when a brain scan was recommended. I felt a huge relief when the CT scan came back all clear. It turned out to be only temporary relief though. Who knew that a CT scan cannot pick up detail like an MRI? I didn’t.

The brain MRI showed inflammation of her cerebellum, a part of the brain sometimes called the ‘small brain’, which sits at the base of the skull. I learnt that this part of the brain does a very important job: it is responsible for fine tuning all movement and coordination of the body. Not just big movements like walking and running, but smaller fine motor control like writing and holding a knife and fork. Even speech and processing of information falls under the remit of the cerebellum, and the cognitive impact of damage to the cerebellum is still not fully understood. So, when you have a problem with your cerebellum, it affects almost every aspect of your daily life, as those who have any type of ataxia will know only too well.

No cause was ever found but unfortunately the inflammation did do some permanent damage, otherwise known as a ‘brain injury’. I left with the words of the lead consultant ringing in my ears: “She may never make a full recovery.” I walked out of hospital with a very different child to the one I walked in with. In fact, I think she was in a wheelchair. This was the beginning of a long journey of rehabilitation with no end and no true understanding of how we got there, and it was very lonely.

I would like to say that I felt we were looked after by the NHS and given the guidance and support that you might expect, but I cannot. I feel very strongly that we were left in a terrifying abyss with no support and it was only through my own research and determination that we were able to learn more.

I am so grateful to Ataxia UK for being a source of support and information in those early days. I still am yet to come across a family who has gone through the same experience with their child, so do get in touch if you are out there.

In my next blog post I will happily share the valuable lessons I learnt on our rehab journey, which still continues, in the hope that I can help other families that might be feeling lost like I was, back in 2016.

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