A single mother from Eagleby, Queensland, has received a life-altering diagnosis of early onset Alzheimer’s disease at the age of 29. Erin Kelly, who has been aware since her teenage years that she may face this condition due to family history, was confirmed to have inherited the PSEN1 genetic mutation, which significantly increases the risk of developing Alzheimer’s.
In June 2024, scans revealed the first signs of neurological damage, with Kelly officially diagnosed shortly thereafter. Her family history is particularly poignant; her mother, Robyne, died from Alzheimer’s at the age of 50, and Kelly’s grandfather and aunt also succumbed to the disease at similar ages. “I just didn’t think it would come for me so soon,” Kelly shared in an interview.
Understanding Early Onset Alzheimer’s
Alzheimer’s disease is a progressive brain condition that commonly leads to memory loss and cognitive decline, typically affecting individuals over the age of 65. Early onset Alzheimer’s, diagnosed before 65, is rare and can significantly alter the lives of those impacted. While doctors cannot predict the exact progression of the disease, early symptoms have already begun to take effect for Kelly.
“I’ve started to notice small changes already,” she said, describing how she sometimes struggles to find the right words or mixes them up entirely. “It’s things I didn’t do previously.” As her condition is expected to deteriorate over time, Kelly remains focused on creating lasting memories for her eight-year-old daughter, Evie.
“The goal is to see her finish school, get married,” Kelly explained. “I want to make sure she’s an adult before I die.” With her daughter still young, Kelly and her family are navigating the challenges of how to communicate her diagnosis to her.
Funding Treatment and Raising Awareness
To support Kelly’s treatment, her stepsister, Jessica Simpson, has set up a GoFundMe page aimed at raising funds for a medication called lecanemab (LEQEMBI). This treatment could potentially slow the progression of Alzheimer’s, but the cost for 18 months of treatment could reach up to $90,000. Unfortunately, in October 2024, the Therapeutic Goods Administration (TGA) in Australia decided not to register the medication.
Despite her diagnosis, Kelly has been informed that her age disqualifies her from participating in clinical trials in Australia. Simpson remarked on the urgency of the situation, stating, “This treatment could give her more time to keep working, keep functioning and most importantly, keep being Evie’s mum for as long as she can.”
According to Dementia Australia, dementia encompasses a variety of illnesses that lead to a progressive decline in functioning, affecting memory, intellect, and social skills. Approximately 433,000 Australians are currently living with dementia, and about 29,000 are diagnosed with younger onset dementia, affecting individuals in their 30s, 40s, and 50s.
Jessica Simpson emphasized the disconnect many people have regarding Alzheimer’s, noting, “Most people don’t associate Alzheimer’s with someone so young. Someone still packing school lunches, doing bedtime stories and showing up every day for their child.” As Erin navigates her diagnosis, she remains determined to make the most of her time with Evie, while raising awareness of the challenges posed by early onset dementia.
