Topic overview
In brief
- Jesy Nelson's twin daughters are undergoing surgery to remove their feeding tubes due to Spinal Muscular Atrophy Type 1.
- Jesy has campaigned for SMA awareness and successfully advocated for nationwide newborn screening.
- Despite progress, there are still gaps in access to screening for some regions in the UK.
Summary
In September 2025, Jesy Nelson announced that her twin daughters, Ocean and Story, who are now 14 months old, were diagnosed with Spinal Muscular Atrophy Type 1 (SMA), a rare muscle-wasting condition. This diagnosis has significantly impacted their lives, necessitating the use of feeding tubes. As the surgery date approaches, Jesy has expressed her fears and anxieties about the operation to remove these tubes, which have been a part of her daughters' lives since birth. She shared her feelings on social media, highlighting the emotional toll of the situation and her longing to see her daughters' faces without the tubes.
Jesy has been an advocate for SMA awareness and has campaigned for newborn screening for the condition across the UK. Last month, she celebrated a significant victory when it was announced that the SMA Type 1 screening test would be rolled out nationwide, a change she fought for passionately. This screening involves a simple heel prick to collect a blood sample from newborns, allowing for early detection of the disease. Jesy expressed pride in the progress made, stating that it would change the lives of future babies diagnosed with SMA.