One Year-Old Boy Stopped Moving at 7 Weeks, Leaving Mom Devastated Over Son's Rare Condition

Amy Lewis, 33-year-old mom, is dealing with a lot of emotions and financial troubles while managing her one-year-old son Niko who was recently diagnosed with spinal muscular atrophy (SMA) type one-an unusual spinal ailment. The news came in September 2023, just months after Niko seemed healthy when he was born.

Amy has found herself uncertain about the future of her son since Niko's condition causes little movement of his muscles apart from serious feeding problems, breathing difficulties, and difficulties with swallowing. According to the diagnosis, Niko might live less than two years if not treated.

Initially overwhelmed when he stopped moving completely and started displaying signs of distress, Amy, who had been taking good care of him as a typical happy baby boy along with a four-year-old boy, Blake, could not believe that this was happening. He had worsened by his seven-week check-up resulting in Amy seeking urgent medical attention. The blow was even more devastating because it was confirmed that SMA type one is a condition characterized by progressive muscle weakness and disability.

Complications and Ongoing Challenges

Despite starting gene therapy through Zolgensma, which is meant to add in another copy of the functional SMN gene, Niko's journey has been far from smooth. In March 2024, he contracted respiratory syncytial virus (RSV), which escalated into a life-threatening situation requiring life support. A scoliosis diagnosis followed shortly afterward, making matters worse for him.

Amy manages a range of medical equipment for Niko every day - a ventilation mask every night, three nebulizers daily, and a cough assist machine three times a day. All these care actions seem unending to Amy, who often stays awake all night to check her son's oxygen levels.

Fundraising for Essential Equipment

Amy initiated a Go Fund Me campaign, intending to raise £10,000 so that Niko could get the best care possible. £3,000 will go toward purchasing a custom-made back brace, and the rest will pay for private physiotherapy sessions. She believes that this equipment can greatly improve Niko's quality of life.