A mother whose two-year-old son lives with a severe muscle-wasting condition is urging the NHS to introduce a simple, life-changing test for all newborns that costs just £5.
A Campaign Born from Heartbreak
Samantha Williams, 38, from Sofrydd, Newport in South Wales, is supporting a new campaign by the Mirror. The campaign demands the NHS roll out a heel prick test to screen for Spinal Muscular Atrophy (SMA) at birth. Her son, Lucian Neale, now two-and-a-half, was diagnosed with SMA Type 1 at just seven weeks old.
Without treatment, SMA Type 1 is a life-limiting condition with a life expectancy of around two years. Soon after diagnosis, Samantha and her partner, mechanic Justin Neale, 39, were told to prepare for palliative care. However, Lucian's story took a miraculous turn. He can now sit up unaided, stand with leg splints, propel his wheelchair, and has started saying a few words. He is due to start nursery school in September.
"I wholeheartedly back the Mirror’s campaign to roll out the heel prick test," Samantha stated. "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."
The Crucial Difference of Early Diagnosis
Samantha is adamant that a simple, inexpensive test at birth would have transformed her son's life. "A heel prick test costs the NHS just £5, but would have changed everything for us and for Lucian’s quality of life," she explained. Lucian is still fed entirely by a feeding machine, a reality Samantha believes could have been avoided.
The campaign gained further prominence after pop star Jesy Nelson, 34, revealed in January 2026 that her seven-month-old twins, Ocean and Story, had been diagnosed with SMA Type 1 after months of gruelling tests. Samantha saw Jesy's video and felt a deep connection. "It broke my heart. I’ve been there. But there is hope," she said, offering words of support to the singer.
Lucian's Fight for Life
Samantha's pregnancy with Lucian in October 2022 followed the tragic loss of another baby, Carson, at 30 weeks. Lucian was born by C-section at 37 weeks. Early concerns were dismissed, but at five weeks old, his breathing became odd and he stopped moving altogether. A desperate Google search led Samantha to information about SMA.
Rushed to hospital, Lucian had a feeding tube inserted and genetic testing confirmed SMA Type 1 at seven weeks. Doctors warned it was time for palliative care. "He could only move his fingertips. I felt like the bottom dropped out of my world," Samantha recalled.
Seeking a second opinion at their local hospital in Cardiff, the family was encouraged to try Risdiplam, an at-home oral medication. Within four days, Lucian showed slight movement. After 35 days in hospital learning complex care, Lucian was allowed home in August 2023. That October, he received "miracle" gene therapy.
"Over the months he started to sit independently," Samantha shared. "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's campaign argues that implementing this £5 test universally on the NHS could prevent other babies from being needlessly paralysed by SMA, ensuring treatment begins before irreversible damage occurs.
