> At a Glance
> – Jesy Nelson and fiancé Zion Foster welcomed premature twins Ocean Jade and Story Monroe on May 15, 2025
> – The girls spent weeks in NICU and later received a Spinal Muscular Atrophy Type 1 diagnosis
> – Why it matters: The rare genetic disease could limit life expectancy and mobility, placing the family in urgent treatment race
Jesy Nelson has revealed that her eight-month-old twins, Ocean Jade and Story Monroe, are fighting Spinal Muscular Atrophy Type 1, a severe neuromuscular disorder that doctors warn could leave them never able to walk.
From High-Risk Pregnancy to Premature Birth
The former Little Mix singer announced her twin pregnancy in January 2025, disclosing that the babies shared a single placenta, a condition known as monochorionic diamniotic (MCDA).
- Doctors warned one twin might drain nutrients, risking death for both.
- Mid-pregnancy, Nelson developed twin-to-twin transfusion syndrome (TTTS).
- An emergency surgery in March 2025 successfully stabilized blood flow, clearing TTTS.
Ocean and Story arrived nine weeks early on May 15, 2025, and spent multiple weeks in the neonatal intensive care unit hooked to monitors and feeding tubes.
Life-Changing Diagnosis
On January 4, 2026, Nelson posted a tearful video explaining that endless tests had confirmed SMA Type 1, a genetic disease that destroys the nerve cells controlling muscle movement.
Key facts:
- Without treatment, life expectancy can drop to age two.
- The twins will probably never regain neck strength and are likely to remain disabled.
- Both have started therapy, though specifics were not revealed.
> “The last three months have been the most heartbreaking time of my life.”
>
> – Jesy Nelson
> “Still smiling through all the challenges. Daddy loves you so much.”
>
> – Zion Foster
A Mother’s New Perspective
Since NICU discharge in June 2025, Nelson has publicly embraced body positivity, crediting her postpartum shape for bringing her “the best gift” and vowing her daughters will “defy all the odds.”
Timeline of Events
| Date | Milestone |
|---|---|
| Jan 2025 | Pregnancy announced; MCDA twins confirmed |
| Mar 2025 | Emergency TTTS surgery deemed success |
| May 2025 | Birth at 31 weeks; NICU stay begins |
| Jun 2025 | Babies discharged home |
| Jan 2026 | SMA Type 1 diagnosis revealed |
Key Takeaways
- SMA Type 1 is a rare, inherited neuromuscular disorder requiring immediate intervention.
- Nelson and Foster remain publicly optimistic while privately grappling with grief and uncertainty.
- The twins’ early birth and shared-placenta complications foreshadowed ongoing medical challenges.
The family now focuses on specialist care and cherishing everyday milestones as Ocean and Story continue what their mom calls “the most inspiring story to tell.”
