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Liv Heeney, a resident of Birmingham, discovered at the age of 28 that she carries a faulty gene that puts her at risk of developing a rare form of dementia called early onset frontotemporal dementia (FTD). This genetic condition has already impacted 13 members of her family, including her mother Bernie, who tragically passed away from the disease at the age of 54. Living with the knowledge that she will likely develop FTD in her 40s and succumb to it in her 50s, Liv is using this information to take proactive steps to ensure that any future children she may have do not inherit the gene.
Growing up, Liv witnessed several family members, including her granddad and siblings, battling with dementia before she was even born. As a teenager, she began to notice her mother’s unusual behavior, such as missing work and making inappropriate comments. The first significant sign was when her mother did not have a strong emotional reaction to her own father’s passing, leading Bernie to confide in others about her worries regarding her own cognitive decline.
Bernie’s decline due to FTD began shortly after her 50th birthday in 2013. Liv vividly recalls her mother losing the ability to communicate, perform basic self-care tasks, and understand her surroundings as the disease progressed. In 2017, Bernie tragically passed away at home while Liv was en route from university in London, highlighting the devastating impact of this genetic condition on their family.
Despite the emotional toll, Liv made the decision to undergo genetic testing at Birmingham Women’s Hospital in January 2024 to determine if she carries the same faulty gene as her mother. The testing process, which lasted eight months, ultimately confirmed her fears when she tested positive for the defective microtubule associated protein tau (MAPT) gene. This revelation, while not entirely surprising to Liv, has compelled her to take steps, including exploring IVF and embryo screening, to prevent passing on the gene to her future children.
Liv emphasizes the importance of dispelling the misconception that dementia only affects older individuals, highlighting that it is a disease involving physical changes in the brain, similar to cancer or AIDS. Despite her diagnosis, Liv remains determined to live her life on her own terms and is actively raising funds for Alzheimer’s Research UK. She acknowledges the reality of her condition and the impact it may have on her future, but she is resolute in making the most of her time and advocating for more research and support for individuals affected by FTD
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