Jesy Nelson

TL;DR:

Jesy Nelson shared her twins’ SMA type 1 diagnosis on January 4, 2026.
She said doctors warned they may never walk, but treatment has begun.
Posts were meant to raise awareness of early signs and fast care.
The condition is rare, but modern drugs can improve outcomes if started early.
Families asked for support, screening, and clear information on care options.

On January 4, 2026, Jesy Nelson posted a video on Instagram revealing that her eight-month-old twins, Ocean Jade and Story Monroe, have spinal muscular atrophy type 1. She said doctors warned the girls may never walk and need ongoing respiratory and feeding support. She thanked the care team and urged parents to seek help if they see warning signs.

The Guardian reported that the twins were born in May 2025 after a high-risk pregnancy. Nelson described months of tests before the diagnosis and said treatment is now underway. She called for better newborn screening and public awareness.

Key details, dates, and context

People reported that Nelson’s video was recorded to inform fans and other parents. She and her fiancé, musician Zion Foster, said they remain hopeful as the girls start care plans. Entertainment Weekly noted strong support from fans and peers after the post.

ITV News published an explainer on SMA and how it affects infants. It outlines muscle weakness, breathing issues, and feeding problems as common early signs. Early diagnosis improves outcomes.

What is SMA type 1

SMA type 1 is a rare genetic condition that affects the nerve cells that control movement. Infants often show weak leg movement, floppy limbs, poor head control, and trouble feeding or breathing. Without treatment, it can be life-threatening. Awareness and quick referrals are vital.

Treatments now used

Care plans can include disease-modifying drugs and supportive care.

Risdiplam (Evrysdi): an oral medicine available on the NHS that raises SMN protein levels. It can be taken at home.
Nusinersen (Spinraza): given by spinal injection in specialist centers, including Great Ormond Street Hospital.
Onasemnogene abeparvovec: a gene therapy known as Zolgensma. A newer intrathecal version, Itvisma, recently gained FDA approval to treat older patients, expanding options beyond the original under-twos label.

Doctors tailor choices to age, weight, prior care, and clinical status. Supportive care often includes respiratory support, nutrition, and physiotherapy. Families should ask the care team about access routes, timing, and possible side effects.

Timeline

May 2025: Twins born prematurely at 31 weeks, then discharged after neonatal care.
September 2025: Nelson and Foster announce their engagement.
January 4, 2026: Nelson shares the SMA type 1 diagnosis and treatment start.

Early signs parents asked to watch for

Nelson’s message highlighted signs that matched official explainers: limited leg movement, low muscle tone, weak head control, rapid belly breathing, poor suck or feeding, and frequent chest infections. Contact a GP or pediatrician fast if these appear.

Quick checklist for readers

Situation	What to do	Why it helps
Baby seems floppy or has weak leg kicks	Call your GP or pediatrician	Early referral speeds diagnosis
Feeding or swallowing trouble	Ask for feeding and swallowing assessment	Reduces risk of aspiration
Fast belly breathing or frequent chest infections	Seek urgent medical advice	Supports breathing and oxygen
Delayed head control	Request a neuromuscular review	Early therapy can improve function
Family history of SMA	Ask about genetic testing	Guides treatment and planning

What happens next

Nelson said the twins have started treatment. Families in the UK can access risdiplam, nusinersen, or gene therapy after specialist review. Pathways vary by age, weight, and center capacity. New approvals for intrathecal gene therapy in older patients signal a wider set of options in coming years. Expect more data and guidance updates from regulators and hospitals in 2026.

Background on Jesy Nelson

Nelson rose to fame with Little Mix, then launched a solo career. In recent years she focused on health, family, and selective releases. Public updates since early 2025 centered on pregnancy, the twins’ early arrival, and recovery at home.

Why it matters

Newborn screening and fast access to treatment change the outlook for SMA. Nelson’s post brought wide attention to a rare condition at a crucial time. With timely care, many children gain better motor function and longer survival. Public awareness can push for screening, faster referrals, and support for families.