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Liv Heeney

At the age of 28, Liv Heeney learned she carried a faulty gene which could probably cause her to develop a uncommon form of dementia in her younger years.

Early onset frontotemporal dementia (FTD) has already affected over a dozen relatives of her family, including her mum Bernadette, who died from the condition when she was 54.

The woman, from the West Midlands, is facing the truth that she will likely experience the illness during her forties and pass away in her fifties – but she's using the information to make certain any children she has are free with the genetic mutation.

It's also provided her the chance to prepare for a family, but she said: "It's a delicate balance. I don't want to look so far ahead that I'm missing out on the present."

Understanding FTD

Frontotemporal dementia is a form of cognitive impairment that causes problems with behavior, language and memory, with most cases identified in people aged 45 to 65.

Additionally, it is hereditary, with about 12.5% of those diagnosed with the disorder possessing a familial connection.

Liv Heeney

During her childhood, Liv knew her granddad and several siblings had died prematurely to the disease before she was born, and she was a teenager when she started noticing her mother's out-of-character behavior.

"She no longer appeared her usual self, she was missing work which was highly out of character [as] she loved her job. She would [also] utter inappropriate comments," she explained.

"I think the big initial indicator was when my grandfather, my dad's father died [in 2012] and she showed little an emotional response to it."

"My mum sort of shared with people that she was concerned that what was happening to her dad was happening to her," she added.

A Gradual Deterioration

Bernie was diagnosed with dementia shortly after her fiftieth birthday in 2013, with her husband becoming her primary carer.

She stated her mum quickly lost the ability for the ability to speak, as well as basic skills such as personal hygiene, walking, eating and taking fluids.

"When she was diagnosed, I believe she didn't really know of her situation."

In 2017, she passed away at home while her daughter, who was only 21, was in a cab rushing to board a last-minute train home from college in the capital.

Liv Heeney

After years of deliberating, Liv chose to begin the procedure of DNA analysis in January 2024, in the hope of discovering whether she had received the same gene that led to her mum's dementia.

After an eight-month process from the initial conversation, the result came from a simple blood sample which took about five minutes, she said.

"I long believed that I had the gene, that the same would occur to me... For some reason, it was simply a intuition," Liv, of her local area, added.

That August that year, she found out she had tested positive for the faulty microtubule associated protein tau (MAPT) gene.

"Me and my partner her partner attended the appointment, and before I'd even sat down on the seat, she [the geneticist] just said 'I'm really sorry, it's not the outcome we wanted'."

Liv noted the confirmation was "difficult to put into words" but it "was not a shock."

Liv Heeney

For many people who are young adults, the possibility of dying at a young age is not something they have to dwell on.

But for Liv, who is employed as a creative professional in the city, the illness is something she thinks about daily.

The well-being of potential offspring was one of the main reasons she – who has a partner of many years – desired to find out whether she carried the mutation.

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

Through IVF and genetic screening of embryos, she aims to ensure she can guarantee future kids she has will be delivered without the defective gene.

"Upon discovering you have the gene, options exist to make sure that you don't pass it on now," she remarked.

Liv Heeney

'Unrelated to Aging'

She said a common misconception was that the condition only affected the elderly.

"It's just not the case that [dementia] is a inevitable aspect of growing older, it is an illness, involving alterations to your brain."

"It is an ailment similar to cancer and HIV, even like Covid – it's a physical thing in the human system," she said.

She thinks there ought to be more financial support and research into frontotemporal dementia.

In spite of her genetic result, Liv is resolved to lead her existence the way she has planned. Next weekend, she will be holding a charity event in Birmingham for a dementia research charity.

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

"I know the reality of this, I know what lies ahead."