Topic overview
In brief
- Jesy Nelson's twin daughters, Ocean and Story, had their feeding tubes removed after battling Spinal Muscular Atrophy (SMA).
- The twins were diagnosed with SMA Type 1 in September 2025, a condition that severely affects muscle strength.
- Jesy expressed her pride in the recent rollout of SMA screening tests across the UK, which will help future babies.
Summary
In the United Kingdom, Jesy Nelson expressed her joy as her twin daughters, Ocean and Story, had their feeding tubes removed. The twins, who are now 14 months old, were diagnosed with Spinal Muscular Atrophy (SMA) Type 1 in September 2025. This rare condition affects motor neuron cells in the spinal cord, leading to severe muscle weakness. Jesy had previously shared her fears about the surgery but was overjoyed to see her daughters' faces without the tubes. She also highlighted the emotional impact of the surgery, stating that she had forgotten what it felt like to cuddle them without worrying about the tubes. Jesy has been an advocate for SMA awareness and recently celebrated the rollout of a newborn screening test for SMA across the UK, a significant achievement resulting from her campaigning efforts. This screening will help identify SMA in newborns early, allowing for timely treatment that can improve outcomes for affected children. Jesy's commitment to raising awareness about SMA has made a difference in the lives of many families, and she expressed pride in the progress made in the fight against this debilitating condition. The removal of the feeding tubes marks a hopeful step forward in her daughters' health journey.