As the Mirror launch our campaign to demand no more babies are left needlessly paralysed by a devastating muscle wasting disease, we speak to mum Sam Williams, whose two year old son has SMA Type 1
Mum Samantha Williams is backing The Mirror’s campaign to roll out NHS heel prick tests for SMA on the NHS “100%.” Her son Lucian Neale, now two-and-a-half, was diagnosed with SMA Type 1 – which can have a life expectancy of two years without treatment – at seven weeks old.
Soon after, Samantha, 38, and her partner Justin Neale, 39, were told to prepare for the worst and begin palliative care. Miraculously, Lucian survived and can now sit up unaided and stand with the help of leg splints. He can propel his wheelchair forwards, has a few words and is set to attend nursery school in September.
READ MORE: ‘My son’s horror condition is so rare it doesn’t have a name’
But Samantha says if Lucian had received the heel prick test at birth, the outcome would have been very different. “A heel prick test costs the NHS just £5, but would have changed everything for us and for Lucian’s quality of life,” says supermarket worker Samantha, who lives in Sofrydd, Newport, South Wales. She has an older son, Liam, 16, while Lucian’s dad, Justin, a mechanic, also has a 16-year-old son.
“I wholeheartedly back the Mirror’s campaign to roll out the heel prick test,” says Samantha. “The later SMA [classed as life limiting and not terminal ] is diagnosed in a baby or child, the more severe the symptoms.
“Days, even hours, count. The sooner a diagnosis is made, the sooner treatment can begin, which not only saves lives, but halts the muscle degeneration in its tracks. It’s incredibly hard – almost impossible – to regain.
And this is why parents are often told their child will never walk. My son would be living a normal life now if he’d been given that heel prick test. Lucian’s still fed entirely by a feeding machine. His quality of life is down to a £5 test. “
We are launching our campaign after pop star Jesy Nelson, 34, revealed that her seven-month-old twins, Ocean and Story, born in May 2025, had been diagnosed with SMA Type 1, after months of gruelling tests and may never walk.
Samantha says: “When I saw her video, it broke my heart. I’ve been there. But there is hope. We were told we’d have to say goodbye to Lucian, but now he’s two and a half and can stand on his own two feet for a few seconds – he can sit up too. There is help out there Jesy. And while you’ll need to fight for your babies every step of the way, you’re stronger than you think.”
Samantha fell pregnant with Lucian in October 2022, soon after losing another baby, Carson, at 30 weeks, and gave birth by C-section at 37 weeks, following complications including low movement and gestational diabetes. “When nurses were doing their initial checks, he went blue and was rushed down to a paediatric doctor. It happened twice, but we were reassured that Lucian was simply taking a little longer to come into the world,” she says.
Samantha was concerned that he immediately slept through the night, adding that at five weeks, his breathing became odd and he sounded chesty. “Then at five weeks and five days, he stopped moving at all or lifting his head,” she says. A Google search took her straight to SMA.
Rushing him to hospital, he was admitted to have a feeding tube inserted and his DNA was sent for genetic testing. Two weeks later, at seven weeks, a diagnosis of SMA Type 1 was confirmed. Warned by doctors that it was time to give him palliative care, Samantha continues: “He could only move his fingertips. I felt like the bottom dropped out of my world.”
Luckily, Samantha and Justin sought a second opinion. “Back at our local hospital in Cardiff, we were encouraged to try Risdiplam, an at-home oral drug that over-produces the SNM protein to make up for what is missing,” she says. Four days later, Lucian – who could still succumb if he catches a cold or RSV – showed slight signs of movement.
“There was a glimmer of hope for us. We spent 35 days in hospital, learning life support, and how to use Lucian’s feeding and suction machines, his cough assist, and medicines,” she says. “When we were in the hospital, he aspirated and almost died because he cried so much he couldn’t control his saliva.”
Allowed home in August 2023, that October Lucian had “miracle” gene therapy. “Over the months he started to sit independently. While he hasn’t hit milestones at the right time, he has some words, he goes around in his wheelchair and is a beautiful, happy, cheeky little boy. “There’s no guarantee, but there is hope”
*The Mirror first met Lucian back in December, during our Christmas campaign for Lifelites, an assistive and sensory tech charity that helps children like him play and connect. You can donate to Lucian’s treatment fund HERE
READ MORE: ‘Our children’s hospice creates magical Christmas memories for families to treasure’
