Not Just a World Record Attempt: Rachael’s Fight for Huntington’s

First published in Orange City Life, 17 August 2017

Tireless advocate for Huntington’s Disease, Rachael Brooking, shares her gut-wrenching story behind the upcoming redhead world record attempt.

The upcoming world record attempt to gather as many redheads as possible to our humble city of Orange is gaining great momentum, with celebs on board and news coverage Australia-wide. While that’s fantastic, it’s important not to forget the underlying reasons behind this massive feat: to raise awareness and funds for Huntington’s disease, a rare disorder which has affected organiser Rachael Brooking’s life in confronting ways.

Rachael’s mother, Frances Kelly, was only fifty years old when she died of Huntington’s disease. A talented and much-loved local – her striking red hair the inspiration behind the event’s ‘redhead’ theme.

“Mum was beautiful,” Rachel says. “She was talented, she was gorgeous, she did lots of modelling, she was a signwriter and she was very artistic, very sought-after.

“She was the first one [in the family] to be diagnosed with Huntington’s, nobody knew it existed in the family. [Mum’s] parents were both killed when I was three months old in a car accident in Orange, so they were still relatively young, and hadn’t really started showing any symptoms.”

While Rachael speaks proudly of her mother, she says regretfully that they weren’t very close when she was younger. “I tended to be a bit of a daddy’s girl and [my brother] was a mummy’s boy – happens in all families I think,” she says matter-of-factly, yet her eyes fill with tears.

Rachael's mother, Frances Kelly

Frances Kelly (Photo supplied)

“As her symptoms progressed we just clashed, she would take it out on me and I would take it out on her, so we had a bit of a rocky road in the lead up to her being diagnosed, which I often feel quite guilty about.”

While Rachael has received the all-clear from the disease herself, meaning there is no chance she will pass the disease on to her children (“a saving grace,” Rachael says), she also carries guilt for the plight of her younger brother who has been diagnosed with HD. “There is a 50/50 chance for children of parents who have the disease,” Rachael tells me. “It’s fabulous being gene negative, but it comes with its own hang ups and issues.”

I ask how it all started with her mum.

“Mum could be clumsy – but we can all be clumsy. Her memory would sometimes be not so good. She did random things sometimes, things you’d just shake your head at, ‘what’s mum doing?’. We never put this all together at the time, this was when I was young.

“It got to the point where Mum found it difficult to keep working, tasks just seemed to be getting harder and things like managing finances, driving, all those things that we all take for granted started to get harder.

“I was at school, mum wasn’t working she was just at home, but she wasn’t really coping with house duties, or cooking. There were lots of injuries, lots of burns. She wasn’t going about her day like most people her age with two children.

Rachael contacted some family members with her concerns, including her father, who Rachael’s mother had left in a spur-of-the-moment decision probably attributed to the disease. “Mum left dad, it was one random things that people [with Huntington’s] do when they think that things will be better, or they try to fix things.

“Once we knew that something was definitely wrong I was probably about fifteen I think. I found out that the school fees hadn’t been paid and the electricity was about to be cut off and all these things, she would sell things randomly. I have nothing of hers left because she sold everything.

“Mum was about 38 at that stage.”

There is an appealing forthright demeanour to Rachael. She’s smart, self-aware and determined to make a difference to the lives of those who have been diagnosed with Huntington’s, as well as their carers. I wonder how people with Huntington’s Disease were treated by their community before the disease was discovered?

“Often you find out that they’d been put in the mental institution because people thought they were crazy – the physical symptoms are very confronting,” Rachael says. “Some are worse than others, but they can’t be stopped, those physical moments. It used to be called Huntington’s chorea – that’s sort of an old term, they’ve moved away from that now and gone with Huntington’s Disease. But chorea is Latin for ‘dance’.”

Rachael and her children

Rachael and her children (Photo supplied)

Even today, Rachael explains, people with Huntington’s are often mistreated – purely because there isn’t much awareness. “There are lots of stories of women going into places like coffee shops with their children and being affected [by the symptoms of HD], and the shop assistants calling the police, because they think the mother is under the influence of drugs and alcohol.

“You can’t stop the movements, they are very big movements. Head ticks, leg kicks, arm movements. I remember mum laying on the lounge and her legs would go up in the air like she was doing aerobics, all day, constantly, there’s nothing you can do to stop it.”

I comment that it must be difficult for the carers, too, and Rachael takes a deep breath and relaxes her shoulders – as though she’s relieved to talk about it, or perhaps for the issue to be acknowledged.

“Absolutely. It’s the same with any carer, they have a lot of emotional burden and emotional stress, and they really have to hold it together. I don’t think you really realise at the time, because you’ve got to do it, so you just do it.

“There needs to be a lot more services for carers – respite. A break! In the future, when my brother (who lives in Sydney) does progress, it’s just Dad. Dad’s in his mid-60s, he’s had a double knee replacement. He’s going great, he’s wonderful, but emotionally and mentally it’s exhausting and that tires you out.”

Rachael knows all too well the emotional strain of caring for someone with HD, having stayed in Orange after finishing school in order to care for her mum. “I’d go in the morning, get her out of bed, get her dressed and get her breakfast, go to work, then come by at lunchtime – because it can affect their swallowing, when they get worse it affects their ability to swallow so they have to be careful not to choke…

“She was forty-five when she went into the nursing home,” Rachael says, leading her to talk about the importance of facilities for younger people with serious illnesses. “My brother may end up in a similar situation. He likes gaming, he likes movies, he likes dirt bikes and watching the grand prix on tele!” Rachael says, raising her voice with refined yet obvious frustration.

“You’ve got to put them where? There’s no hostel. Places like Wontama get built and they’re amazing, built with gazillions of dollars, but there’s no wing for younger people. How can there not be a wing included in the development plans?

“Not just for HD, there’s so many people out there who are young that can’t live at home anymore; whether it’s brain injury or autism, HD, or early onset dementia. And for the beds that aren’t taken, could they not be used for respite for carers?”

The talk of other illnesses leads me to talk about all the support provided to various larger charities – such as cancer – while a lot of the smaller diseases go without funding. I wonder why that is?

“The difference is everyone’s been affected by cancer,” Rachael says. “It’s so close to home for a lot of people. For me, too – my dad had cancer.”

For that reason, it’s perhaps both a blessing and a curse that HD is so rare. In Australia, the rate of Huntington’s is about 1 in 8000, which means you are unlikely to know someone who has it. This makes fundraising for research and support services an extra challenge, with many businesses and individuals wanting only to support local and/or close-to-home initiatives.

“There is HD scattered around the Central West,” Rachael says. “But there’s not a lot. The money that I raise goes to Huntington’s NSW, they currently have one full-time support worker to service the whole of NSW and ACT.

“Even though there aren’t that many [HD affected people], she’s travelling from Port Macquarie to Forster, to the South Coast, to Bega… she can’t offer much time, she’s absolutely fantastic and run off her feet. And within the last few months they’ve only just employed one part-time youth worker, to deal with the younger people with HD.”

Launching (red)head first into action to raise money and awareness, Rachael has taken on not one, but four events: a special screening of The Inheritance, one family’s story of their journey with HD; a Walk4Hope in Robertson Park; a Gatsby themed high tea; and of course, the World Record attempt which will be only a small part of an action-packed day for the whole community – gingers and non-gingers alike.

Rachael mentions that she wants people to come to all events, but is particularly keen to get more bums on seats for the movie screening. She hasn’t seen all of it herself as yet, but is looking forward to it – she was told about the film by the people at Huntington’s Disease NSW.

“It’s about a family who were originally from Australia, then they moved to NZ. Their mum was alive when the film was made but has since passed away. It’s just about their HD journey.

“There’s some other commentators on there, [Television Journalist] Charles Sabine is on there. He’s at risk of HD – I can’t remember if he ended up getting tested or not – but he shares a good analogy that I like to share.

“He’s been a journalist all over the world in third-world countries, and at one point he was held hostage with some other journalists, he said there was a grenade held to his head. For most people that would be the most frightening thing they could ever experience, but he said it was nothing compared to going to getting the test for HD.

“There’s lots of counselling, quite a lot of processes involved before having the test. You’ve got to go away and think about it and then come back for more counselling. It’s quite invasive the testing process, and you’ve got to be mentally ready to accept the results.”

I ask Rachael if she had the test as soon as she was able.

“Yes. After looking after mum all day every day, it was just the constant questions in my head, ‘Is this going to be me?’

“You can talk yourself into it with just normal memory loss, having a bad day, having a clumsy day. Any number of things can set off a trigger, ‘that’s it I must have it!’. Some people can block that out, there’s an awful lot of people who choose not to have the test. An awful lot.”

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