At just 29, Queensland mum Erin Kelly is facing the heartbreaking reality that she’s living on borrowed time.
A single parent to her eight-year-old daughter Evie, Erin has recently been diagnosed with early onset Alzheimer’s – a devastating blow made even more cruel by its rare genetic cause.
Now she’s in a race against the clock to fund the one treatment that could slow it down.
‘There’s no chance of me reaching retirement age so I’m doing everything I can now, while I still can,’ Erin told the Daily Mail.
Alzheimer’s typically strikes later in life, but for Erin, it’s deeply personal, and terrifyingly genetic.
In May 2024, the young mum discovered she carries a rare mutation of the PSEN1 gene, one that guarantees she will develop Alzheimer’s earlier than normal.
Only about 200 families worldwide carry it.
‘With young onset Alzheimer’s, they (the specialists) said only 1 per cent of young onset Alzheimer’s cases are caused by a genetic mutation,’ Erin said.
At just 29, Melbourne mum Erin Kelly (pictured with daughter Evie) is facing the heartbreaking reality that she’s living on borrowed time after being diagnosed with early onset Alzheimer’s
‘I always knew there was a 50/50 chance I’d develop it later in life. But even with my family history, I never imagined it would happen to me this early.’
Erin lost her mum to Alzheimer’s when she was just 17. Her mum was only 50.
After further digging, she’s now found out that eight members of her extended family have battled the disease too.
However, the PSEN1 mutation is what makes Erin’s diagnosis so rare and so aggressive.
Doctors can’t say much without more tests, but have told Erin that her life expectancy is between another eight to 15 years.
The official diagnosis came in July, following a year-long journey of MRIs, specialist consultations and anxious waiting.
It was Erin’s father who first urged her to get tested for the mutation in May 2024, after she began noticing small lapses and mixed-up words, which she initially dismissed.
‘A year ago I contacted Alzheimer’s Australia, but they originally said they couldn’t help because I didn’t have a confirmed diagnosis yet,’ she said.
Erin (middle) lost her mum to Alzheimer’s disease when she was just 17. Her mum was only 50 (right)
‘So, I reached out to many others including neurologists, and they all said they didn’t really know what to do with me. But then I ended up with a geriatrician [a doctor specialising in the care of the elderly], and he is helping.’
Despite early symptoms and a clear family history, getting answers has been slow and costly.
Specialists charged up to $500 a visit. Each scan costs her hundreds more. She has since been referred to a neuropsychologist, speech therapist and dietitian – but couldn’t afford to see any of them.
Even a medical drink called Souvenaid, formulated to support memory in Alzheimer’s patients, was too expensive at $100 a month.
‘I’ve had to pick and choose what I can pay for. I just can’t justify that as well, given the position we’re in,’ she said.
Despite her diagnosis, Erin was told she is too young to qualify for Australian clinical trials or subsidised treatment.
‘It’s like they don’t know what to do with me,’ she said.
But there is a treatment that could help, which is a breakthrough infusion drug called Leqembi.
In May last year, the young mum discovered she carries a rare mutation of the PSEN1 gene, one that guaranteed she would develop Alzheimer’s earlier than normal. It affects about 200 families worldwide
Leqembi, which is administered as an infusion every two weeks, has been shown to slow the progression of Alzheimer’s by up to 30 per cent.
It works by targeting and removing the sticky amyloid plaques that kill brain cells and cause cognitive decline.
There’s just one problem – it’s only available on a case-by-case basis for people aged 50 to 90, and at a staggering cost of $90,000.
‘My doctor basically said that I don’t cover a lot of the criteria. But if I can supply the money, then I’ve got a much higher chance of being accepted,’ she said.
Since Evie was six weeks old, it’s been just the two of them. Erin has poured every ounce of her energy into raising her daughter and building a stable life.
Now, she’s fighting to hold onto that life and the precious time she has left.
She’s started creating photo books and writing letters for Evie, capturing memories and family stories she fears she won’t be able to tell one day.
‘I want her to remember who I was. Who her grandmother was, too, as I’m the only one who can tell her that,’ she said.
A breakthrough infusion drug called Leqembi could delay Erin’s symptoms by up to 30 per cent, but she is too young to qualify for it – unless she can pay $90,000
Erin’s family hopes to raise the full $90,000 to cover ongoing treatments and give her a fighting chance at slowing the disease in its tracks.
If treatment becomes impossible, the funds will help create lasting memories with Evie too, as well as special time together, and the chance to simply live while she still can.
‘She’s not asking for a miracle,’ her stepsister Jessica said.
‘She’s just asking for more time.’