OUR FAMILY CURSE

First it was her nan, then her mum...Charlotte Conn, 27, was terrified this awfuldisease would come for her too

- KERRY HARDEN, RIA NEWMAN.

The smell of toast drifted into the room as I sat down on my nan's sofa to watch cartoons. Moments later, she appeared with a tray. 'Dippy eggs and soldiers,' she said, setting my dinner down in front of me. It was 2002 and, aged five, Nana Lin, then 53, always picked me up from school and looked after me while my mum, Elaine, 33, was busy working at her HR job.

Nan took me to dance class, stopping to buy me some sweets on the way home. As far as I was concerned, she was the best and I loved our close relationship. But as time passed, Nan started to slur her words and grew unsteady on her feet. As I was still so young, I barely noticed, but when I turned 11, in 2008, I discovered the truth.

'Nan has Huntington's disease,' Mum explained. Also known as HD, it's a degenerative condition causing parts of the brain to stop working properly. Over time, it'd gradually get worse, causing issues with speech, memory, even swallowing and breathing. Eventually, it would claim her life.

I was so upset. 'I can't lose Nan,' I sobbed. But there was more.

'It'll happen to me, too,' Mum said, gently. She explained that HD is genetic and although Mum wasn't yet displaying symptoms, she'd opted for a test two years earlier, which had shown that she was a carrier of the gene. And it meant there was a 50% chance I would inherit the condition as well. Mum had decided to tell me now, as I'd started asking questions about Nan and she'd felt I was mature enough to learn the truth.

'I'm so sorry,' Mum said, tears rolling down her face. It was a lot to take in, especially as I was still so young and I don't think I fully digested it all.

But as Nan's condition worsened over the next few years, the shadow of HD loomed over me. I watched first-hand as this evil disease took over, feeling so angry and frustrated that there was no cure.