A woman whose mother was diagnosed with Huntington’s Disease [HD] when she was a teenager has written a kids’ book to help other children understand the illness.
The book – complete with cartoons – illustrates HD in an age-appropriate way so that doctors’ jargon and terrifying internet tales don’t become the sole narrative.
Emma Terranova Davis was just 14 when her mum was dealt a devastating blow and learned she had HD; a disease that causes the progressive degeneration of nerve cells in the brain.
It is often coined ‘the mother of all neurological diseases’, featuring a mixture of traits from other brain disorders. It affects a person’s ability to walk, talk, swallow, and think. It also brings about huge personality changes, ones that aren’t always so favourable as it affects the part of the brain that’s responsible for judgement, emotional reactions, and ability to rationalise.
The results can manifest as volatile mood swings and suicidal thoughts. Along with that, sufferers become severely disabled, with loss of balance, control, and weakness, all which are associated with Motor Neurone Disease and Progressive Supranuclear Palsy.
The diagnosis led Emma to kickstart the Campaign For My Brain awareness programme, in which she shares knowledge about HD as well as fights for disabled rights with her Stop The Mockery petition – calling to end long and often humiliating funding reassessments for those with irreversible disabilities or progressive conditions.
Speaking exclusively to Uspire, Emma explained why she set about writing the books and revealed that her own daughter, four, was a huge inspiration behind them.
She said: “I started Campaign For My Brain in 2018 after a horrific two years trying to get help for mum from social services, followed by another year-long battle for Continuing Healthcare [NHS funding], which we won.
“I remember thinking to myself: ‘How can anybody do this? I’ve spent 10 years as a paramedic, and I can’t do it!’ So, I thought we’ve just got to help people.
“I started sharing my story online, then met my friend Catrin from North Wales. Our story echoed her dad’s story from seven years before. She said she wanted to come onboard.
“We started off just raising awareness, then my mum had a really bad summer last year, so I tried explaining to my daughter who’s four and I remember thinking her understanding was incredible. I’d ask if she was scared, and she’d say: ‘I’m not scared, that’s how nanny is’.
“Her view on it was just really beautiful. I wondered why she was like that, and I think it’s because we’ve been so open since the day that she was born that her nanny’s not very well but we can keep her happy, we can make things a bit better, but the doctor can’t fix her.
“That’s what made me think, this needs to go in a book. I really could’ve done with a book myself growing up. I just felt terrified when I clicked on the internet, it was all doom and gloom. A lot of research from charities shows that the more you tell children, the more they adapt rather than shocking them later in life. It’ll tell the story of HD alongside illustrations by a volunteer. We’re close to finish and it’ll be sold through Amazon by summer.”
Emma revealed that watching the illness take hold of her mum was a traumatic time, especially not understanding the changes at first which we were subtle shifts in her cognition before evolving into unexplained mood outbursts.
She explained: “It created a lot of anxiety for me. My sister moved to uni. I had no idea what our future would look like. We were just in this storm. I knew something was wrong, just intuitively, I was always quite protective of mum anyway.
“I was immensely scared. I didn’t want to talk about it. As a young child, I felt very out of control, very anxious. Like I needed to be around mum all of the time. It’s made me into the person I am today though, and I’ve become really grounded, selfless and understanding. It’s made me massively compassionate to other people’s needs and what they’re going through.
“I don’t judge as much either; we were very much so when I’d be out with mum and people would think she was drunk. Now, if I see someone struggling, whether I think they’re drunk or not, I’ll ask if they need a hand. Whereas people would just look and stare at mum.”
Emma’s anxiety continued to grow as she got older, knowing there’s a 50% risk HD is hereditary. Fortunately, however, bother Emma and her sister are clear from it.
Now a mother herself, Emma splits caring for her mum with professional caregivers. However, the Coronavirus outbreak has tipped their world upside down as she can’t swap between her own household and her mother’s freely – especially as Emma works as a paramedic and is therefore unable to practice self-isolation.
Emma said: “It’s breaking my heart not seeing my mum, she’s had bad nights when I’ve not been there. I can’t just jump in and help anymore. I’ve had to leave it to my dad and the carers. I miss him too, we have a good relationship. When I go and see mum at the window, she screams and goes mad, so I know she loves it when I visit. My little girl is really missing them too. One day at a time at the moment.”
Asked about what how she’d like education to change for the public to understand HD, Emma said she wants neurodegenerative diseases to be higher on the priority list.
She added: “Strokes are recognised, but everything else seems bottom of the pile compared to cancers or learning disabilities.
“There needs to be more specialist nurses, more specialist doctors, more availability for specific packages such as access to occupational therapists working in these areas, much like you get a specialist Parkinson’s nurse for Parkinson’s disease which is obviously so much better because their knowledge is tailored.”