Mum Samantha Williams is fully supporting The Mirror’s initiative to implement NHS heel prick tests for Spinal Muscular Atrophy (SMA) on the National Health Service without reservation. Her son Lucian Neale, now aged two and a half, was diagnosed with SMA Type 1 at seven weeks old, a condition that typically has a life expectancy of two years without intervention.
Shortly after the diagnosis, Samantha, 38, and her partner Justin Neale, 39, were advised to prepare for the worst and start palliative care. Against the odds, Lucian survived and can now sit and stand with the aid of leg splints. He can maneuver his wheelchair, communicate a few words, and is gearing up to start nursery school in September.
Reflecting on Lucian’s journey, Samantha emphasizes that if he had undergone the heel prick test at birth, the outcome would have been vastly different. Samantha, who works at a supermarket and resides in Sofrydd, Newport, South Wales, stresses that a simple £5 heel prick test could have significantly altered their lives and improved Lucian’s quality of life. Samantha has an older son, Liam, 16, while Lucian’s father, Justin, a mechanic, also has a 16-year-old son.
“I wholeheartedly support The Mirror’s campaign to expand the heel prick test availability,” Samantha states. “The later SMA diagnosis in a child, the more severe the symptoms become, with time playing a critical role in the effectiveness of treatment. Early diagnosis not only saves lives but also stops the progression of muscle degeneration, which is extremely challenging to reverse.”
Expressing the impact of delayed diagnosis, Samantha underscores that many parents are informed that their child may never walk due to the progression of the disease. She firmly believes that if Lucian had received the heel prick test, he would be leading a normal life today. Lucian still relies entirely on a feeding machine for sustenance, underscoring the crucial role of a simple £5 test in determining his quality of life.
The launch of this campaign follows 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 rigorous testing, facing the possibility of never walking.
Drawing on her own experience, Samantha empathizes with Jesy, highlighting the hope that exists despite the challenges. Samantha recalls the initial concerns during her pregnancy with Lucian, following the loss of another baby, Carson, and the complicated birth that led to Lucian’s delivery via C-section at 37 weeks. Early signs of Lucian’s condition emerged soon after birth, leading to a series of medical investigations culminating in the diagnosis of SMA Type 1 at seven weeks old.
Fortunately, Samantha and Justin sought a second opinion, opting for Risdiplam treatment, which showed promising results, albeit with ongoing risks, especially in the face of respiratory infections. Despite the challenges, Lucian displayed encouraging signs of improvement after receiving specialized care and treatment.
Released to go home in August 2023, Lucian underwent gene therapy the following October, marking a turning point in his progress. Samantha recounts Lucian’s developmental milestones, noting his gradual progress in sitting independently, communicating verbally, and maneuvering his wheelchair, portraying him as a joyful and spirited young boy with a fighting spirit.
The article concludes by referencing The Mirror’s previous interaction with Lucian during a Christmas charity campaign for Lifelites, an organization that supports children with disabilities through assistive technology. Additionally, it provides a link for readers to contribute to Lucian’s treatment fund.