People who might have seen Salym Liufau, her husband, David, and four children posing for professional photographs in a leafy park likely thought they were just another family having pictures taken for their Christmas card.
After all, how could they have known the deeper significance of the occasion? At the end of the 45-minute shoot in November 2024, Liufau took the photographer aside and gently requested a portrait of her alone.
‘I wanted a photograph of just me,’ she tells the Daily Mail, adding, ‘It’s for my obituary.’
The 33-year-old is living on borrowed time after being diagnosed with amyotrophic lateral sclerosis (ALS,) the progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
It causes the motor neurons, which control voluntary muscle movement, to degenerate and die, ultimately leading to whole body paralysis.
According to the Mayo Clinic, the average life expectancy of patients is between two and five years. Estimates vary, but the National ALS Registry suggests less than 30,000 people in the United States have the disease and about 5,000 people receive the diagnosis every year.
It is rare – there is a less than 1 percent chance of developing the disease without a family history – but with an aging population experts in the field expect that to rise.
Liufau’s symptoms began a month before the family moved from her home city of Las Vegas to Houston, Texas, in September 2022.
Salym Liufau in her motorized wheelchair. She made a point of commissioning this photograph to appear in her obituary
From left, Jai, David, Clover, Meadow, Salym and Leyla Liufau in a park in their home city of Houston, Texas
They surfaced at her aunt’s 60th birthday celebration when her daughter, Clover, then four, twirled across the dance floor with the other children at the party.
The mother beckoned her over so she could swing her around. But, as she squatted to scoop the child into her arms — an instinctive motion she’d done effortlessly for years — the muscles in her back didn’t engage. She couldn’t stand up.
Fortunately, there was a table nearby and she managed to steer herself towards a chair without falling over.
‘My auntie was right there and asked if I was ok,’ Liufau says. ‘But I brushed it off, saying I was fine.’
Then 30, Liufau put it down to the stress of having to lift so many boxes ahead of the move, along with juggling childcare for Clover and her sister, Leyla, six, and boy/girl twins Jai and Meadow, two, while working part-time as a cosmetologist.
But, while she initially dismissed the incident at the party as a one-off, she became worried two weeks later when her left foot felt weak and unresponsive.
Something as simple as keeping a flipflop on her foot proved difficult.
Still, she was so caught up with the move, she didn’t have time to see a doctor. She tried to put it to the back of her mind, telling herself that she’d get checked out once they had arrived in Texas if the symptoms persisted.
Liufau had always been a strong, fit woman with no particular health concerns. She watched what she ate and worked out regularly in the at-home gym she shared with her husband, Dan, now 35.
Yet by Christmas her energy levels had plummeted. She used to be able to run on the treadmill for at least two miles with relative ease. Now she could barely do a quarter of that distance without needing to stop.
She started suffering from foot drop, a condition where a person has difficulty lifting the front part of their foot, causing it to drag or slap on the ground when walking.
At the end of January, four months after moving to Houston, Liufau finally saw her new primary care provider when her mother came to stay to help look after the children.
The Liufau family before Salym was diagnosed with ALS
Salym pictured with her husband, Dan, now 35
‘I explained about not being able to move my foot,’ Liufau says. ‘He said it was probably nothing serious and might be caused by some kind of vitamin deficiency.’
However, after blood work came back normal, the doctor sent her for a series of MRI scans. Again, there was no evidence that anything was amiss. All she knew was that she was feeling weaker by the day.
In mid-February, she was referred to a neurologist. But he could only see her in late May. ‘I knew in my heart that I couldn’t wait that long,’ she says. ‘By then, my gut was saying there was something seriously wrong.’
Desperate to find answers, she took matters into her own hands and headed to the ER at Houston Methodist Center. As part of the check-up, she had a simple procedure to test her reflexes.
The doctor tapped her knee with a hammer. But her leg didn’t jerk. Similarly, when tested, her foot didn’t exhibit the Babinksi reflex – a natural response which sees the toes curl downward when the sole is stimulated. Its absence is an indicator of possible damage to the central nervous system.
The physician was so alarmed that Liufau was admitted immediately and monitored for 10 days.
During that time she lost count of the number of follow-up exams, including more MRIs as well as CT scans that she underwent.
She had a number of electromyography (EMG) procedures which involve inserting a thin needle electrode into the muscle to measure both muscle and nerve function.
The results showed dramatically reduced activity, especially in her spine and legs.
‘One of the doctors turned to me and said, “I’m afraid you have a long way to go before we discover the true cause,”’ the mother says.
Liufau was prescribed steroids to minimal effect, but eventually, after almost two weeks of tests, and an agonizing month-long wait for the results of a muscle biopsy, she received the chilling diagnosis.
‘By then I could only get around on a walker,’ she recalls. ‘My anxiety and stress were building.’
Liufau, who had turned 31, will never forget the morning of May 23, 2023. She had ALS. The original neurologist she’d waited so long to see delivered the crushing news as David sat across from her on the examination table.
‘Time stood still,’ she says. ‘I froze then burst into tears.’
Liufau had always been a strong, fit woman before she developed the progressive neurodegenerative disease
Liufau in hospital in 2023. She had a battery of tests before her final diagnosis that May
In truth, the diagnosis came not so much as a shock but as confirmation of her deepest fears.
In her darkest moments, she had dreaded it could be ALS — she’d been in touch with an old school friend with the disease and compared symptoms. Now, with her own diagnosis, she knew she might not live to see Jai and Meadow start kindergarten.
Next, she faced the heartbreaking task of telling her family, starting with her parents and in-laws. ‘I’m a great believer in ripping off the Band Aid so I called them on the drive home.’
Returning to the house to find the children playing happily, not realizing for a second that their mother was so sick, was hard. She didn’t want them to see her cry, so she hid her tears as her distraught mother led her to her bedroom.
Inevitably, however, she had to tell the two oldest kids what to expect.
She sat them down and gently took their hands. ‘I’m not going to get better, but it’s going to be ok,’ she said. She described how, just as her legs could no longer function, other parts of her body would follow suit.
‘I have the most tender, loving kids,’ says Liufau, who has chronicled her journey on social media. ‘The twins will get me a blanket whenever I need one. We have lots of hugs and cuddles.’
She is already raising the children to do practical tasks that other mothers not on borrowed time might teach their kids when they’re older.
Leyla and Clover independently bake cookies and brownies and even cook vegetables. They relish snuggling up to her and have learned how to do her favorite hobby of crochet.
Before the muscles on her hands fully succumbed to ALS, Liufau has made a point of crocheting a giant woolen turtle toy for each child.
They’re a work in progress, but she has already recorded comforting messages on a tiny microphone which can be activated inside them because she knows that her vocal cords will inevitably fail.
‘If they wake up in the night, they can squeeze their turtle and hear me say how much I love them and that I’m watching over them,’ she says.
As for David, Liufau calls him her ‘angel on earth.’ She says she doesn’t need or expect grand romantic gestures from him. Something as simple as him getting her dressed in the morning or putting pillows behind her head before going to work exemplify his devotion.
Liufau’s diagnosis came not so much as a shock but as confirmation of her deepest fears.
Liufau with her four children on a trip to the store
‘We’re making the most of the time we have left together,’ she says. Still, there are moments of intense emotion. Clover recently blindsided her by suddenly asking Liufau whether she was going to die. She recalls, ‘I said, “Yes, but we don’t know how soon.”
‘Clover said, “It seems like a lot of people with ALS die.” And I said, “Yes, it’s incurable and so I will pass away.”’
Then Clover asked if her father would get remarried. According to Liufau, ‘I looked her in the eye and said, “I hope so.” It was true. I want him to live a full life.’
In the meantime, she says, as her health deteriorates, she spends the time she has left making precious memories.
It was one of the reasons she commissioned last year’s touching family photo shoot. She sat in her motorized wheelchair — which she tells the children is her ‘big girl’s chair — wearing a flowing pale green dress adorned with white magnolias.
David and the kids wore coordinating outfits. ‘There were smiles and laughter,’ she says.
The photographer said she would be honored to take the single portrait for her obituary.
‘I know people might expect me to want to be pictured as the woman I once was, standing and walking tall,’ Liufau says.
‘But life is fragile and my story isn’t just about who I was before ALS, it’s about who I am now.’