Mum Samantha Williams is lending her support to The Mirror’s initiative advocating for the implementation of NHS heel prick tests for SMA on the NHS without reservation. Her two-and-a-half-year-old son, Lucian Neale, was diagnosed with SMA Type 1 at the tender age of seven weeks, a condition that typically carries a life expectancy of two years without intervention.
Following the diagnosis, Samantha, 38, and her partner Justin Neale, 39, were advised to prepare for the worst and initiate palliative care. Against all odds, Lucian defied expectations and can now independently sit up and stand with the assistance of leg supports. He has the ability to propel his wheelchair forward, has begun to vocalize a few words, and is scheduled to start nursery school in September.
Samantha emphasizes that had Lucian undergone the heel prick test at birth, the outcome would have been drastically different. A simple £5 heel prick test could have altered the course of their lives and significantly improved Lucian’s quality of life, according to Samantha, a supermarket employee residing in Sofrydd, Newport, South Wales. She is a mother to an older son, Liam, 16, while Lucian’s father, Justin, a mechanic, also has a 16-year-old son.
“I fully support The Mirror’s campaign for the widespread availability of the heel prick test,” Samantha states. “The later the diagnosis of SMA, classified as life-limiting rather than terminal, the more severe the associated symptoms. Every moment counts, as early diagnosis not only saves lives but also arrests muscle degeneration effectively, a feat that becomes increasingly challenging over time.
“This is why parents are often informed that their child may never walk. If Lucian had undergone the heel prick test, he would be leading a normal life today. His complete reliance on a feeding machine underscores the impact of a £5 test on his quality of life.”
The campaign gains momentum following pop star Jesy Nelson’s revelation that her seven-month-old twins, Ocean and Story, born in May 2025, were diagnosed with SMA Type 1 after enduring arduous tests and facing the prospect of never walking.
Samantha empathizes with Jesy’s plight, recalling her own experiences. However, she offers a glimmer of hope, citing Lucian’s remarkable progress. Initially pregnant with Lucian in October 2022 after the heartbreaking loss of another child, Carson, at 30 weeks, Samantha underwent a C-section at 37 weeks due to complications such as reduced fetal movements and gestational diabetes.
Upon Lucian’s birth, alarming incidents led to immediate medical attention, with concerns escalating as he exhibited peculiar breathing patterns and ceased movement entirely at five weeks and five days. A swift Google search directed Samantha to SMA, prompting an urgent hospital visit resulting in the insertion of a feeding tube and genetic testing, culminating in the confirmation of SMA Type 1 at seven weeks.
Despite doctors recommending palliative care, Samantha and Justin sought a second opinion, opting to explore Risdiplam, an oral medication that augments the production of the SMN protein. Within days, Lucian displayed slight movements, offering a glimmer of hope amidst uncertainty.
Discharged in August 2023, Lucian underwent gene therapy the following October, marking a turning point in his journey. Gradually achieving milestones, he progressed to sitting independently and developing basic communication skills, all while exuding happiness and charm.
The article also highlights The Mirror’s prior encounter with Lucian during their Christmas campaign for Lifelites, a charitable organization supporting children like him with assistive and sensory technology. Donations to Lucian’s treatment fund are welcomed and can be made through the provided link.