Amy Lewis, a 33-year-old single mum, has shared her heartbreak after her previously "happy and healthy" newborn son was diagnosed with a rare spinal condition.
Her son Niko, who is now one, abruptly stopped moving at seven weeks old and was later diagnosed with spinal muscular atrophy (SMA) type one.This condition causes 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, from Cardiff, who also has a four-year-old son named Blake, was devastated to learn 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.