Lauren Boag remembers the day she was diagnosed with incurable Huntington’s disease, the news hit her “like a ton of bricks”.
The Insch mum had known the illness was in her family for years, but hadn’t been ready to face up to the fact.
Everything changed in late 2014 when she was pregnant with her first child, and doctors confirmed she’d inherited the Huntington’s disease gene.
There’s no cure for the condition it causes which Lauren, 36, describes as a combination of Alzheimer’s, Parkinson’s and motor neurone disease (MND).
Once the symptoms begin, there’s typically a slow, steady decline in a person’s health – with most eventually needing 24-hour care.
And Lauren is using her time to ensure she makes every day special, with no regrets, so her daughters can have the best lives possible.
‘I wanted to stop it being a cloud that hangs in the background’
Lauren was a teenager when she learned about Huntington’s, and that one of her parents had the gene.
There was a 50/50 chance she’d inherit it too.
“I was very young – about 16 – so I kind of turned a blind eye to it,” she admits.
“It wasn’t until I was settling down and found out I was pregnant that I thought: ‘Well, I want to know now’.”
Deep down, Lauren knew the test was going to come back positive.
There was a period of a few months leading up to getting the news, with regular check-ins to ensure she’d be able to handle the result.
“But it still hit me like a ton of bricks,” she said.
“It was a very difficult thing to hear – especially when I was pregnant and all excited.”
It was not only tough for her, but also her husband Craig.
And it took her until daughter Eva was a toddler, with second child Sienna on the way, for her to fully process it.
Lauren said: “I did take some time to feel sorry for myself and be down in the dumps, and quite rightfully so.
“But at some point I thought of my kids and I wanted to stop this being a cloud that hangs over the background.
“Even though we were loving being parents and moving on with our lives, it was somewhere niggling away for quite a few years.”
‘I want to make my daughters proud’
Lauren, who works in recruitment, decided she wanted to take back control of the situation.
She started fundraising for the Scottish Huntington’s Association which cares for people with the illness and their loved ones affected by it.
Its services are particularly needed in the north of Scotland, which is something of a global hotbed for the gene.
Around 14.6 people in every 100,000 have it – five times the worldwide estimate of 2.7.
So far Lauren has generated more than £26,000 – with her sights set on a £35,000 target by the end of the year.
“There’s not a lot we can do about the disease, so I thought it might be beneficial for me to put my own spin on things and get out there to spread the word.
“I was trying to take something really negative and turn it into a positive – and help my own mindset at the same time.”
After taking part in her first Kiltwalk, Lauren started planning her own events.
This included a charity ball in autumn which netted £8,710 – more than double the previous outing.
The next takes place at the Drouthy Laird, Inverurie, on Saturday November 18.
“The end goal is hopefully making my daughters proud, and maybe they’ll want to continue what I’ve started,” Lauren said.
“They’ve taken part in the fundraising as well and love being part of it – it’s very much a family thing.
“The charity has helped other members of our family, and the girls know they’re doing something good, so it’s positive for them as well.”
Life would be very different without charity help
Lauren’s parents have benefitted greatly from the Scottish Huntington’s Association, which has specialists who’ve helped make their home more disability-friendly.
Through the charity, the family regularly meet up with others affected by the condition.
It also supports young people who may be struggling with caring for a parent, or who are unable to live with them due to the care required.
And Lauren thinks life would be vastly different without it.
She said: “I realised what they were doing and how they were helping people.
“They’ve supported my family and will probably support me more in the future.
“If they weren’t around, hopefully I’d have found another cause for the fundraising side – but the support and everything the charity has done for me personally is irreplaceable.”
‘We’re taking it one day at a time’
As it stands, Lauren is facing a “waiting game” for the onset of symptoms, which typically begin between 30 and 50 years old.
For many, depression is quite common at the onset, as is clumsiness or fidgety movements.
Other signs include memory lapses, mood swings and difficulty moving.
Full-time nursing care is required for people in the later stages of Huntington’s.
Lauren said: “It’s a waiting game to see when the symptoms start.
“It took a while to get my head around it and how it would affect life and the kids.
“You feel like something’s been taken away.
“But, at the same time, every family I know has something they’re dealing with – and this is just what we have.
“Whether it’s better or worse is not the point.”
She added: “We do the best we can to take it a day at a time and support each other.
“We want to get on with it, make memories and have no regrets, and do everything we can to make sure the kids have the best life.
“When I’ve been speaking to people about Huntington’s, a lot aren’t familiar with it.
“The more people speak about it, hopefully the closer we get to that cure one day.
“And I have a lot of hope that day will come in my lifetime.”
For more information on Lauren’s fundraising, visit LB Events on Facebook or email lauren_boag@hotmail.com
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