> At a Glance
> – Jesy Nelson reveals 8-month-old twins have Spinal Muscular Atrophy Type 1
> – Doctors warn Ocean Jade and Story Monroe may never walk
> – Nelson launching petition to add SMA to UK newborn screening
> – Why it matters: Early detection could be life-changing for babies born with this rare genetic condition
In her first interview since sharing the devastating news, Jesy Nelson fought back tears as she detailed how her twin daughters’ rare diagnosis has transformed her home-and her life.
The Diagnosis That Changed Everything
Appearing on This Morning Wednesday, the 34-year-old singer explained how SMA Type 1 means her babies will likely never walk or regain neck strength. Born prematurely at 31 weeks on May 15, 2025, Ocean and Story now require round-the-clock medical care.
> “My whole hallway is filled up with medical stuff,” Nelson said. “My whole life has just completely changed.”
The twins’ daily routine now includes:
- Breathing machine for Story at night
- Cough assist machines to help clear airways
- Feeding tubes to remove chest secretions
- Constant monitoring of vital functions
The Heartbreaking Reality
What pains Nelson most is the shift from mother to medical caregiver.
> “I just want to be their mom, I don’t want to be a nurse,” she admitted, her voice cracking. “It’s hard.”
The Little Mix alum revealed she’d noticed developmental delays before the formal diagnosis, but medical professionals had cautioned against comparing milestones due to the twins’ premature birth.
A Mother’s Mission
Nelson plans to launch a petition pushing for SMA screening to be added to the UK’s standard newborn blood spot test, currently given to babies at 5 days old.
| Current UK Newborn Screen | What Nelson Wants Added |
|---|---|
| 9 rare conditions tested | + SMA Type 1 screening |
| 5-day-old blood spot test | Same test, expanded panel |
> “When you know there is something that can be done about it, and it is life-changing to your child, that’s the part that I cannot accept,” she emphasized.
Despite the challenges, Nelson remains hopeful, drawing strength from her daughters’ resilience and their bond as twins going through this journey together.
Key Takeaways
- SMA Type 1 is the most severe form of spinal muscular atrophy in babies
- Early treatment significantly improves outcomes and life expectancy
- Nelson’s twins received treatment but face permanent mobility challenges
- UK currently screens for 9 conditions; SMA isn’t included
- Nelson believes early screening could have changed her daughters’ prognosis
The singer’s emotional plea highlights a critical gap in newborn screening that could affect thousands of families across the UK.
