At a Glance
- Jesy Nelson’s fiancé Zion Foster shared a poem about their twin daughters’ spinal muscular atrophy diagnosis on Jan. 14.
- Ocean Jade and Story Monroe, born in May 2025, were diagnosed with SMA Type 1 after parents noticed limited leg movement and feeding issues.
- Foster demands newborn SMA screening in the UK, calling current policy “indefensible” now that treatments exist.
- Why it matters: The family’s public plea spotlights gaps in UK newborn screening for a treatable genetic disorder.
Jesy Nelson’s fiancé Zion Foster has publicly revealed the emotional toll of their twin daughters’ rare neuromuscular diagnosis through a poem posted to Instagram on Jan. 14. The couple’s daughters, Ocean Jade and Story Monroe, born eight months ago in May 2025, were found to have spinal muscular atrophy (SMA) after their parents noticed developmental concerns.
Diagnosis Journey
The family’s path to diagnosis began when Nelson and Foster observed that the twins showed less leg movement than expected and struggled to feed properly. Born premature at 31 weeks, the girls spent time in the Neonatal Intensive Care Unit. Medical professionals initially advised the couple not to compare their daughters’ progress with other babies.
Later evaluations confirmed SMA Type 1, the most severe form of the inherited disorder. Nelson recalled being told the children would “probably never gonna be able to walk” and would likely never regain neck strength, resulting in lifelong disability. Doctors recommended immediate treatment while cautioning that outcomes remained uncertain.
What is SMA?
Spinal muscular atrophy is an inherited neuromuscular disorder that causes muscle weakness and wasting. The condition stems from the loss of specialized nerve cells in the spinal cord that control voluntary muscle movement. According to the Cleveland Clinic, SMA severity varies by type, with Type 1 presenting earliest and most aggressively.
Foster’s Poetic Tribute
In his Instagram video, Foster recited original verses addressed to his daughters:
- “They said it’s unlikely you’ll walk, you may not be able to talk, probably won’t be able to hold your head up, that’s what me and Jesy heard, SMA Type 1.”
- “I watch your smiles like sunsets, not promised, but real. I listen to you babble the sweetest melodies.”
- “My worry is quieter than that, deeper. It’s about accepting you, loving you for who you are right now, without conditions.”
Foster directly questioned medical certainty, stating, “doctors only go near what they can measure, so what’s certain?” He framed his daughters as warriors, noting, “I hear strength in your lungs every time you cry, two little warrior girls who already know how to fight.”
Call for Policy Change
Alongside the poem, Foster used the caption to demand systemic reform. He praised Nelson for “addressing a huge flaw in our healthcare system,” labeling her “the definition of a superwoman.” He argued that UK policy is “indefensible” given the availability of “revolutionary treatments” and urged immediate implementation of newborn screening for SMA.
Foster thanked the SMA community for ongoing support and ended with the rallying cry: “Test kids at birth for SMA in the UK now.”
Public Disclosure Timeline
- Jan. 4, 2026: Nelson posted an Instagram video revealing the diagnosis, tearfully recounting medical predictions and the urgency of treatment.
- Jan. 14, 2026: Foster released his poetic video, amplifying the couple’s advocacy for newborn screening.
Key Takeaways
- Ocean Jade and Story Monroe were diagnosed with SMA Type 1 after showing reduced movement and feeding difficulties.
- Foster’s poem underscores parental acceptance while challenging medical prognoses.
- The couple is campaigning for universal newborn SMA screening in the UK to enable earlier intervention.
- Both parents continue to document their journey publicly, drawing attention to the disorder and potential policy changes.
