As the roller coaster climbed upwards, I could feel my stomach-turning. Panic rose inside me, but despite the fear of the impending drop, I’d never felt so alive. It was May 2011, and in that moment, I knew that whatever the future held for me, I had to make sure I never stopped living my life to the fullest.
In 1999, my mum Myra, then 66, was diagnosed with Huntington’s disease (HD). A neurological condition, it stops the brain from working properly, affecting speech, movement, memory and personality.
Although I worked as a nurse, I didn’t know anything about the condition and the diagnosis came as a shock. Progressive and incurable, it was awful to see Mum fade away.
Soon after, I gave birth to my daughter Emily, in 2001, but just months later, Mum died. I was devastated, and now a mum myself, I was terrified about what it meant for my family.
Caused by a faulty gene, HD is a hereditary condition, and there was a 50 per cent chance I’d develop it, too.
‘You can take a test,’ the doctor informed me, but I wasn’t ready. Instead, I threw myself into raising my own family with my husband.
My daughter Kerry was born in 2002, followed by Gemma in 2007, and I concentrated on being the best mum that I could be.
FACING FEARS
I got in touch with Scottish Huntington’s Association (SHA), who offered counselling and advice, and their support was a lifeline.
But after my marriage broke down in 2011, something shifted. I hated the uncertainty hanging over my future, and with counselling, I felt ready to face my fear.
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