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Liv Heeney

When she was 28, Liv Heeney found out she had a faulty gene that would probably lead to her to suffer from a rare form of cognitive disorder at a young age.

Young-onset FTD has already affected over a dozen relatives of her family, such as her mother Bernadette, who succumbed to the disease at the age of 54.

The woman, from Birmingham, is living with the reality that she will probably experience the illness during her forties and pass away in her fifties – but she's leveraging the information to make certain any children she has are free with the genetic mutation.

It's also given her the opportunity to plan for a family, but she stated: "This is a delicate balance. I aim not to look so far ahead that I'm missing out on now."

Understanding Frontotemporal Dementia

FTD is a type of dementia that causes problems with behavior, language and memory, with the majority of diagnoses identified in people between 45 to 65.

It can also be inherited, with approximately one in eight people with the condition having a familial connection.

Liv Heeney

During her childhood, Liv was aware her granddad and multiple brothers and sisters had lost their lives prematurely to dementia prior to her birth, and she was a teenager when she began observing her mum's unusual behaviour.

"She just didn't seem her usual self, she was missing work which was very unusual [as] she adored her job. She would [also] make unsuitable comments," she explained.

"In my opinion the major initial indicator was when my grandfather, my father's dad died [in 2012] and she showed much of an reaction to it."

"My mum sort of shared with people that she was concerned that what was happening to her father was taking place to her," she said.

A Slow Decline

She was found to have dementia soon after her 50th birthday in 2013, with her husband taking on the role of her main caregiver.

She said her mother soon lost the capacity to speak, as well as fundamental abilities such as personal hygiene, mobility, eating and taking fluids.

"By the time she was diagnosed, I believe she was largely unaware of her situation."

That year, Bernie passed away at home while Liv, who was just 21, was in a cab hurrying to board a hurried train home from university in London.

Liv Heeney

After years of deliberating, she decided to start the procedure of DNA analysis in January 2024, hoping to finding out whether she had inherited the identical gene that caused her mum's dementia.

Following an eight-month journey from the initial conversation, the result came from a straightforward blood sample which took about five minutes, she explained.

"I've always assumed that I carried the gene, that it would happen to me... For some reason, it was just a intuition," Liv, of Hall Green, added.

On 2 August last year, she found out she had tested positive for the defective MAPT gene.

"Me and my partner Ani went in, and prior to sitting on the chair, she [the geneticist] just said 'Unfortunately, we didn't get the result we wanted'."

Liv added the confirmation was "difficult to put into words" but it "wasn't really a shock."

Liv Heeney

For many people who are young adults, the likelihood of passing away at a young age is not an issue they typically consider.

However, for her, who now works as a creative professional in the city, the illness is a matter she thinks about daily.

The health of potential offspring was one of the main reasons Liv – who has a relationship of seven years – wanted to find out if she carried the mutation.

"I believed if I planned to have a family, it was the prudent choice for me to take. That I needed to safeguard them from this," Liv explained.

With the help of in vitro fertilization and genetic screening of embryos, she aims to be able to ensure any children she has will be born without the defective gene.

"Upon discovering you carry the gene, there are ways to make sure that you don't pass it on now," she remarked.

Liv Heeney

'Unrelated to Aging'

Liv said a widespread belief was that the condition primarily impacted older people.

"It's just not the case that [it] is a natural part of ageing, it is an illness, it's physical changes to your brain."

"It's a disease just like cancer and HIV, including Covid – it's a physical thing in the body," she affirmed.

She thinks there should be more funding and research into FTD.

In spite of her diagnosis, Liv is resolved to lead her existence the way she has envisioned. Next weekend, she will be organizing a fundraising night in her hometown for a dementia research charity.

"Should I start a family today, I'll get 15 years with them. If I become a parent in five years time, I'll have a shorter period with them," she commented.

"I know the reality of this, I understand what's coming."