Leona Lolohea was working in retail when she first noticed that her hands were becoming difficult to use and her grip was weakening.
The Gold Coast mother initially believed carpal tunnel syndrome was to blame. But the weakness did not go away. It gradually spread to her arms and legs, leaving her unable to raise her hands above her shoulders and increasingly reliant on support to walk.
Over the following two-and-a-half years, Leona gave birth to premature twins, became pregnant again and attended appointment after appointment as her physical condition continued to worsen.
During a family Christmas cruise in December 2025, she struggled to stand for photographs and became short of breath after walking even small distances.
In July 2026, Leona, then 35, was diagnosed with motor neurone disease (MND), an incurable illness that progressively damages the nerve cells controlling muscle movement.
Her older sister, Akesa Wonglin, told the Daily Mail that the diagnosis followed years of uncertainty, during which Leona repeatedly warned doctors that something was wrong.
‘She kept telling the doctors that something wasn’t right, that she wasn’t feeling well. She was doing physiotherapy, but nothing was working,’ Akesa said.
The mother-of-five now needs growing support with daily tasks while trying to stay involved in the lives of her five children, all aged under 10.
In July 2026, Leona, 35, was diagnosed with motor neurone disease (MND), an incurable condition that progressively damages the nerve cells responsible for muscle movement
There is currently no cure for MND. Average life expectancy is two to five years after diagnosis, although the disease progresses differently from patient to patient.
The first symptom was a weak grip
Leona first became aware of weakness in her fingers two-and-a-half years earlier, while working at clothing retailer Johnny Bigg.
‘At the time, she thought it was carpal tunnel syndrome, so she didn’t take much notice of it,’ Akesa said.
Not long afterwards, Leona became pregnant with twins, a boy and a girl. The babies arrived at 25 weeks and spent their first three months receiving care in a neonatal intensive care unit.
Leona also developed foot drop, a condition that makes it difficult to lift the front of the foot while walking. As her mobility declined, she began using furniture to steady herself.
‘I noticed a significant change. She went from a weak grip to not being able to lift her hands above her shoulders, and eventually had to hold on to something to support herself,’ Akesa said.
Doctors struggled to explain her symptoms
The Gold Coast mum initially assumed she had carpal tunnel syndrome, but the weakness persisted, gradually spreading into her arms and legs
As the weakness progressed, Leona sought help through physiotherapy and chiropractic treatment, but neither brought any improvement.
The seriousness of her decline became especially clear during the family’s Christmas cruise in December 2025, when she was pregnant.
‘That was probably when we really saw how much her walking had declined. She was becoming breathless even over short distances,’ Akesa said.
Doctors continued examining the cause of her symptoms, carrying out neurological assessments and scans.
Specialists at Gold Coast University Hospital initially diagnosed her with multifocal motor neuropathy (MMN), a condition affecting motor nerves. Tests identified damage to nerves in both arms and legs, but doctors were initially unable to confirm MND.
Her condition continued to deteriorate during pregnancy, and a team of specialists, including neurologists and respiratory clinicians, was involved when she gave birth to her youngest daughter in April 2026. Further testing led to her MND diagnosis three months later.
The extent of Leona’s decline became apparent during her family’s Christmas cruise in 2025
‘Being diagnosed with MND has shaken our world’
Motor neurone disease affects the nerve cells that carry messages from the brain and spinal cord to muscles, allowing people to move, speak, swallow and breathe. As the nerve cells deteriorate, muscles weaken and waste away.
Although there is no cure, treatment and coordinated care can help manage symptoms and improve quality of life.
Doctors have not established what caused Leona’s illness. Akesa said specialists investigated possible hereditary factors, but the family has not received an explanation.
After initially keeping her diagnosis private, Leona shared her experience on Instagram.
‘Over the past few years, my life has changed in ways I never expected. After months of appointments, tests, and uncertainty, and so many unanswered questions, I finally have an answer.
‘Being diagnosed with MND has definitely shaken our world. It has changed so much for me and my family, and we are still learning to navigate this new chapter together.’
‘The diagnosis does not define me. It doesn’t take away who I am, the love I have for my family, or the life I still want to live,’ she wrote.
‘MND is a part of my story, but it is not my whole story.’
She is raising five children while losing her independence
Leona and her husband are raising five children, including two-year-old twins and a five-month-old baby. Their eldest son, Lorenzo, has cerebral palsy and hemiplegia following a stroke at birth, while the twins have ongoing medical needs after being born prematurely.
As Leona’s mobility declines, she has become increasingly dependent on her husband and relatives for help with daily activities. Her husband continues to work to support the household, sometimes spending nights away from home.
‘She still wants to be fully involved in her children’s lives and be the most present and attentive mother she can be,’ Akesa said.
The family has been working with social workers and the MND team at Gold Coast University Hospital to arrange additional support.
Leona, who was born in New Zealand, has recently been granted Australian citizenship, and the family is now seeking assistance via the National Disability Insurance Scheme.
‘We want her to be able to stay at home with her family and continue raising her children with dignity, independence, choice and control,’ Akesa said.
As Leona’s mobility declines, she has become increasingly dependent on her husband and relatives for help with daily activities
Research reveals higher MND rates in regional Australia
Recent Australian research has identified higher rates of MND deaths in regional communities, raising questions about environmental risk factors and access to specialist care.
A study led by Macquarie University found that annual deaths attributed to MND more than tripled between 1986 and 2023, increasing from 238 to 781.
Researchers also identified higher MND mortality rates in regional communities than in major cities, with Tasmania recording a mortality risk approximately 40 per cent higher than New South Wales.
The reasons remain unclear, although researchers are investigating possible links to agricultural chemicals.
Professor Dominic Rowe, a senior author of the study, told ABC Radio Hobart that cumulative chemical exposure could be a contributing factor, but further research was needed.
Separate research from Charles Sturt University and Macquarie University examined 51 people living with or newly diagnosed with MND across western NSW between 2023 and 2025.
It found an age-standardised incidence of 3.72 cases per 100,000 people annually, more than four times the latest global estimate cited in the study.
Some communities recorded prevalence rates up to seven times higher than expected, while patients travelled an average of 139 kilometres for specialist care.
‘For the first time in Australia, we are mapping where people with MND live. What we are seeing raises important questions for rural health, with unexpectedly high rates emerging across parts of regional NSW,’ lead researcher Dr Amanda Wright said.
Researchers stressed that the findings did not establish what was causing MND and called for better reporting and further investigation into genetic and environmental factors.
NSW became the first Australian jurisdiction to make MND a notifiable disease in September 2026.
The disease has also affected several prominent Australian rugby players, drawing national attention to MND and its impact on younger people.
Former Queensland State of Origin star Carl Webb died aged 42 in December 2023, almost four years after being diagnosed with the condition.
In May 2026, South Sydney Rabbitohs forward Jai Arrow, 31, announced his MND diagnosis, bringing his NRL career to an end.
Leona’s brother previously played rugby league alongside Arrow and remains close friends with the NRL star.
Former Wallabies hooker Nathan Charles also revealed he had been diagnosed with the disease this October.
The diagnoses have renewed public attention on MND, including questions about whether repeated head injuries in contact sports could contribute to the disease, although a direct causal relationship has not been established.
Leona’s brother previously played rugby league alongside Arrow and remains close friends with the NRL star
Leona’s family is raising money to help her remain at home
Leona’s family has established a GoFundMe appeal to help cover medical expenses, mobility equipment, household costs and additional care.
The sisters grew up in Otara, South Auckland, before Akesa moved to the Gold Coast in 2012. The following year, Leona travelled to Australia to help Akesa after the birth of her daughter.
More than a decade after Leona moved to Australia to help her older sister, Akesa is now supporting her through her illness.
‘I may have to do things differently. I may have difficult days, I may need more help than I once did, but I will continue to find joy, make memories with my babies, love my family fiercely,’ Leona wrote.
‘I will keep showing up for my family, and I will keep choosing hope, even on the days when things feel hard.
‘Because I am so much more than a diagnosis. I am a wife, I am a mum, I am a daughter. I am a sister. I am a friend. I am loved.’
