I'd rather leave it to fate: Woman, 26, refuses test to see if she will go senile like her father
Lisa has a 50/50 chance of having devastating neurodegenerative disorder Wants a family but is says she is not ready to know if she has condition
A young woman faces an uncertain future with her loving fiance – as there is a 50/50 chance he will end up as her carer.
Lisa Heathcock is just 26 but has already seen her father, aunt and grandmother succumb to Huntingdon's disease.
She is afraid that she too will fall victim to the neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and dementia.
Blissful ignorance Lisa Heathcock and fiance Darren Parkes who may become her carer later in life
The condition typically shows symptoms in middle age, but Lisa's grandmother was just 35 when she first fell ill. Every patient is affected differently but the most common symptoms are jerky, uncontrollable movements, dementia, depression, lack of coordination and general decline which more often than not results in an early death from pneumonia, heart disease or physical injury.
Huntingdon's patients in the later stages of the disease need round the clock care and there is no cure.
A simple test could tell whether Lisa is a carrier of the gene before she embarks on married life and the task of building a family with her fiance and childhood sweetheart Darren Parkes, 32.
But recruitment consultant Lisa has chosen to leave her future to fate for now rather than face the possibility that she too will end up needing constant care like her father, Simon.
She said: 'I know Darren would take care of me if I ever fell ill but I don't want to spend the rest of our lives dwelling on what could happen.
'I've always said to him, “Whatever happens, don't put me in a home.” I think that is my biggest fear.
'I find sometimes the only way to get through it is to stay positive. I do have my down days – maybe once every couple of months – but Darren reminds me that there is always someone else out there worse off than you.'
Collect photo of Lisa Heathcock and her father Simon Heathcock, who suffers from Huntingdon's disease
Lisa was only young when her grandmother Muriel died of the disease.
Initially her family suspected she was going senile as she was frequently falling over, bumping into things and at one point set herself on fire. Over time it became apparent that something was seriously wrong and eventually Muriel was diagnosed with Huntingdon's disease.
Lisa's aunt Karen was one of the first people in the UK to be tested for the dominant gene which causes the condition. She tested positive.
Lisa said: 'We didn't see a lot of her as kids and it's really only been in the last four years that we have regularly been around her. She's really quite bad now. She can't stay still, she's constantly moving and twitching.
'She has got progressively worse, but you can still hold a conversation with her, while my dad has gone the complete opposite way.'
Simon Heathcock decided to get tested for Huntingdon's when Lisa was in her late teens. Seeing her grow up and knowing that soon she would want to start a family of her own meant he needed answers about her future.
If he was not a carrier of the faulty gene, then she would neither be. If he was, there was a 50/50 chance Lisa could go on to develop Huntingdon's and pass the gene onto her own offspring.
The results of the genetic test sank him into a devastating depression. Not only would he have to face the horror of Huntingdon's, but so might his daughter.
Lisa said: 'At first my parents kept it quiet for about eight months or so. I think they were trying to come to terms with it and let it sink in.
'In the end, my mother blurted it out during an argument – the usual stuff about me being a bratty teenager, like you do. I had been out at the cinema and she said to me, 'You are so selfish, you don't even realise that your dad is ill.'
'It wasn't the best way to find out but afterwards she sat me down and explained everything. She had all the books and information and told me to come to her with any questions if I had them. But at that point I think I just wanted to stick my head in the sand and ignore it.'
Simon was diagnosed ten years ago at the age of 40 and started showing symptoms soon afterwards. First he developed an uncontrollable twitch in his finger, then another in his shoulder. After a while, his physical symptoms were overtaken by mental ones.
Simon's personality has since deteriorated before his family's eyes. He is no longer capable of showing his wife Jane, 46, love or affection, his selfishness dictates everything and his routine cannot be disturbed at any cost. Lisa bought him a watch with the date on it so she would not have to tell him what day of the week it was several times a day.
She said: 'He still asks, I just tell him to look at the watch now. I don't want to take that little bit of independence away from him by just telling him.'
It wasn't until Lisa formed a relationship gas engineer Darren, a local boy who she had known since she was 14, that she began to think more seriously about what the future might hold for them.
The pair got together eight years ago and have been engaged for two following a romantic proposal in a London hotel. Since then, they have been renovating their home in Dudley, West Midlands, and thinking about starting a family.
Lisa said: 'The time for me to have the test is now really, but I would rather leave things up to fate. I think the reason Darren and I didn't get married straightaway is because having a family is more important to us than a piece of paper.
'Darren has a thirteen-year-old son, Brandon, from a previous relationship and I love him like my own, but I would love nothing more than to be able to have a baby with Darren.
'We are not officially trying, we are just waiting to see what happens. But we've been doing that for a while and there's still no change so maybe that's someone's way of telling me that I need to go have a test first. I don't know.'
If Lisa were to have the test, and it were to be positive, there are some IVF options available to them that would ensure her children were not carriers of the gene. However, for now, Lisa and Darren would rather not know.
Having seen the devastating effect Huntingdon's has had on her grandmother, aunt and now her father, Lisa is not sure she is ready to deal with seeing her genetic lot written out in black and white.
She said: 'At least I know Darren would do the same for me, even if I became a totally different person because of this horrible disease.'
Lisa has earned a golden bond to run in the London Marathon for the Huntington's Disease Association next April. To donate, visit http://uk.virginmoneygiving.com/LisaHeathcock