Jesy Nelson's Twins Diagnosed with Spinal Muscular Atrophy After Premature Birth
Jesy Nelson and her fiancé Zion Foster welcomed twins, Ocean Jade and Story Monroe Nelson-Foster, in May following a premature birth at 31 weeks. Their pregnancy was complicated by twin-to-twin transfusion syndrome (TTTS), leading Nelson to undergo an emergency procedure and spend about 10 weeks in hospital before delivery.
After birth, the twins were diagnosed with spinal muscular atrophy type 1 (SMA1), a severe genetic condition characterized by muscle weakness, progressive loss of movement, and paralysis. Early signs of SMA1 include floppiness, inability to hold up, frog-like leg positioning, and rapid breathing. Doctors warned Nelson that the babies may never walk and might lose neck strength, but they have since received treatment which has shown improvement; without it, the babies' survival would have been unlikely.
Diagnosis came after approximately four months of hospital appointments prompted by concerns over the twins' limited movement. SMA affects about 70 children born each year in the UK, and without treatment, only around 8% survive to age two. Although SMA is not currently included in the NHS newborn blood spot screening— which tests for nine other conditions—NHS Scotland began a two-year pilot including SMA screening last September.
Since 2019, the NHS has rolled out three transformative medicines for SMA, including gene therapy, enhancing treatment prospects for affected children.
