A mother whose previously healthy newborn son was diagnosed with a rare spinal condition after he abruptly stopped moving at seven weeks old is now unsure if he will ever take his first steps. Amy Lewis, 33, from Cardiff , was devastated to learn in September 2023 that her son Niko, now one, has spinal muscular atrophy (SMA) type one, a condition causing limited movement, inability to sit unsupported, and difficulties with breathing, feeding and swallowing due to low levels of the survival motor neuron protein (SMN). Amy, a stay-at-home mum to Niko and his elder brother, Blake, four, also learned that without treatment, Niko’s life expectancy would be under two years.
Despite undergoing successful gene therapy, Niko has faced severe health issues, including contracting respiratory syncytial virus (RSV) in March 2024, which required life support, and a scoliosis diagnosis in May 2024. Amy now ensures Niko wears a ventilation mask every night, uses three nebulisers daily, and a cough assist machine three times a day, which she said can be “overwhelming”. She is now hoping to get more equipment for her son such as a £3,000 custom-made back brace, so she has set up a GoFundMe with a goal of £10,000 to help get private physiotherapy and extra equipment.
Amy told PA Real Life: “It’s very overwhelming – some days are better than others, especially because I’m on my own day-to-day. “Most nights I sit there awake with him just obsessing over his oxygen levels and hop.