Jesy Nelson reveals her twins' battle with rare neuromuscular disorder SMA Type 1

Jesy Nelson has shared that her 9-month-old twin daughters, Ocean Jade and Story Monroe, are battling Spinal Muscular Atrophy (SMA) Type 1. The condition, a severe neuromuscular disorder, was diagnosed after the girls struggled to feed properly. Nelson spoke openly about their health journey on Jamie Laing's Great Company podcast.

The twins were born prematurely at 31 weeks in May 2025, following a high-risk pregnancy complicated by twin-to-twin transfusion syndrome (TTTS). This rare condition, which affects identical twins, can be life-threatening without intervention.

SMA Type 1 is a hereditary disorder causing progressive muscle weakness. Without treatment, it is often fatal before the age of two. However, recent medical advances have transformed outcomes for infants like Ocean and Story.

Between 2021 and 2026, gene therapies such as Zolgensma—a one-time intravenous treatment—became widely used alongside Spinraza (intrathecal infusions) and Evrysdi (oral daily medication). These treatments have dramatically extended life expectancy. Studies like STR1VE and SPR1NT show that early intervention, especially before symptoms appear, can increase median survival from under two years to over five or even ten. Ventilator dependence in treated children has also dropped from 100% to less than 25% by age two.

Nelson expressed hope that her daughters will exceed the typical two-year life expectancy with ongoing treatment. She described them as her 'whole heart and soul' and drew strength from their resilience during this challenging time.

The twins' premature birth stemmed from TTTS, a condition where uneven blood flow between shared placental vessels threatens both babies. Nelson and her ex-fiancé, Zion Foster, had closely monitored the pregnancy due to its high-risk nature.

Ocean and Story's diagnosis comes at a time when SMA Type 1 treatments offer far greater survival rates than in previous years. Their case highlights how early medical intervention can alter the course of a once-devastating condition. Nelson's public discussion of their journey brings attention to both SMA and the complexities of high-risk twin pregnancies.