Seeing Gran die from hereditary disease made me not want kids, but that's changed
A student who had sworn off having children in case she gave them the deadly Huntington's disease says a 'life-changing' scientific breakthrough has changed her mind.
Chloe Hall is only 20 years old but says she had already 'decided not to have children' after watching her grandma die from the progressive hereditary disease.
But after researchers made the landmark announcement on Wednesday that a new gene therapy could slow the onset of the illness by 75%, Chloe is 'over the moon' and reconsidering parenthood.
The accountancy student says she didn't fully understand the disease as a child until watching her grandmother decline and then die from Huntington's in 2013 - at just 49 years old.
Around 7,000 people in the UK suffer from Huntington's, which affects movement, thinking and mood.
Symptoms gradually worsen over time and life expectancy after the onset of symptoms is between 15-20 years.
It is a hereditary disease but onset of symptoms does not usually begin until between the ages of 30 and 50.
Chloe says she was initially eager to get tested but doctors urged her to wait and 'build a bridge with her future' before she thought about finding out about any diagnosis.
But professors at University College London announced this week they had developed a 'spectacular' new gene therapy that could greatly extend 'quality of life' for carriers of the disease.
Chloe, from Ashington, Northumberland, said: "I had decided if I do have Huntington's, I wasn't going to have kids.
"I wouldn't want to pass the disease on - although I totally understand why people do have children.
"It's not even the fact [my children] would lose their mum - it's the fact they would have to look after me.
"I wouldn't want to put that [looking after someone with Huntington's] on anyone else.
"It's heartbreaking, really, watching someone you love deteriorate every day.
"I was quite adamant I wanted to get diagnosed early. [But] the doctor told me there's a lot to think about before jumping into something like this.
"She told me to build a bridge for my future first and then think about doing it - unless I was really positive I wanted to know straight away."
Chloe didn't fully understand the neurodegenerative disease - and what it could mean for her own health - until she lost her grandma.
Chloe said: "When my nana died, that was when I first clicked. Before that I don't think I really understood it properly, to be honest with you.
"I think because I learned about it so young, it gave me time to comprehend it.
"I don't get sad about it anymore, about the thought I might have it - because I've had so much time to deal with it.
"But I think about it more whenever I think about having kids.
"Each patient ends up the same way. They end up needing a feeding tube, they have uncontrollable movements.
"Everything that makes [you] humane [you'll] not have anymore. [People with Huntington's that has developed] have very little quality of life and end up needing to go into a care home."
When the breakthrough announcement came on Wednesday, Chloe was in the hospital to speak to doctors about the disease's impact on the family.
Chloe said: "[Someone said to me] 'have you seen the news about it?' I said 'what news? And he said they've managed to slow it down by 75%.
"I cried my eyes out. I think I made him feel a bit awkward to be fair.
"It's overwhelming. It was amazing. I've not stopped talking about it all day, I've cried all day.
"I'm just over the moon, so pleased. It's just hope - that's all it is."
The prospect of the new treatment delaying the disease and extending 'quality of life' has completely flipped Chloe's worldview.
Chloe said: "Even if I do have [the disease], I would still have children now.
"For me to end up in the state my gran did - [with this treatment] it wouldn't happen until my sixties.
"I'll have lived a good life, I'll still have a high quality of life."
Treatment would, however, be expensive - gene therapy for hemophilia B in the UK currently costs the NHS £2.4million per patient.
Chloe said: "I'm just praying that it will be covered by the NHS. I don't want to get my hopes up too high though.
"But it would be life changing. Absolutely life-changing."