Former Little Mix singer Jesy Nelson has shared devastating news about her infant twin daughters, revealing they have been diagnosed with a severe and rare genetic condition that will change their lives forever.
Heartbreaking Diagnosis for Six-Month-Old Twins
The 34-year-old star, who gave birth prematurely to twins Story Monroe and Ocean Jade in May 2025, explained in an emotional Instagram video that her girls have Type 1 Spinal Muscular Atrophy (SMA). This diagnosis comes after an already traumatic pregnancy where Jesy was hospitalised for ten weeks with Twin-to-Twin Transfusion Syndrome (TTTS).
Jesy described the last few months as "the most heartbreaking three months of my life", stating she has now become a full-time nurse to her six-month-old daughters. Doctors at London's Great Ormond Street Hospital have warned that the twins may never walk and will be disabled for life.
What is Spinal Muscular Atrophy?
According to charity SMA UK, Spinal Muscular Atrophy is a rare neuromuscular condition that causes progressive muscle wasting and weakness. The Type 1 variant that Jesy's daughters have is the most severe form, typically appearing in babies under six months old.
The condition affects approximately 28 babies born in the UK each year. Symptoms can include:
- Severe muscle weakness in arms and legs
- Difficulty with sitting, crawling, or walking
- Problems with breathing and swallowing
- Twitching or shaking muscles
- Bone and joint issues including curved spine
Crucially, SMA is a physical illness that does not affect intelligence or cause learning disabilities.
Urgent Treatment and Life Expectancy
In her emotional social media post, Jesy revealed the gravity of the situation: "If it's not treated in time, your babies' life expectancy will not make it past the age of two." She expressed profound gratitude that her daughters have begun receiving treatment at Great Ormond Street Hospital, stating "If they didn't have it they would die."
There are currently three NHS-funded drug treatments for SMA:
- Nusinersen (Spinraza)
- Risdiplam (Evrysdi)
- Onasemnogene abeparvovec (Zolgensma)
Early intervention is crucial, as treatment can significantly impact which motor milestones children achieve. However, the NHS emphasises that not all patients are eligible for these medicines, and all treatment decisions are made on an individual basis.
The Campaign for Newborn Screening
Currently, SMA is not included in the NHS newborn blood spot screening in England, which tests for nine rare but serious conditions when a baby is five days old. Charity SMA UK is campaigning vigorously for this to change, noting it would cost just £5 per test to add SMA to the routine screening.
There is hope on the horizon, as NHS Scotland will begin screening for SMA from early 2026. Campaigners and families affected by the condition are urging NHS England to follow suit promptly, as early diagnosis dramatically improves treatment outcomes.
Jesy Nelson's heartbreaking revelation has brought renewed attention to this rare condition, highlighting both the urgent need for early screening and the incredible resilience of families facing life-changing diagnoses.
