Jesy Nelson breaks down in tears on This Morning as she shares heartbreaking update on twin daughters’ muscle disease — admitting she’ll ‘never get over it’
Jesy Nelson was overcome with emotion on This Morning as she delivered her first television interview since learning her twin daughters have been diagnosed with a rare and life-altering muscle condition.
Appearing alongside presenters Cat Deeley, 49, and Ben Shephard, 51, the former Little Mix star, 34, spoke candidly about the “gruelling” months that led to the diagnosis of daughters Ocean Jade and Story Monroe, whom she shares with fiancé Zion Foster.
The twins were diagnosed with Spinal Muscular Atrophy Type 1 (SMA1) — a rare genetic condition that causes progressive muscle weakness and affects breathing, swallowing and movement.
“They will probably never walk…”
Fighting back tears, Jesy revealed doctors had warned the girls may never regain their neck strength and will likely need wheelchairs.
“They are probably never going to walk,” she said.
“They are still smiling, still happy — and they have each other. That’s what keeps me going.”
Jesy admitted her home now “looks like a hospital”, explaining how she has had to rapidly learn medical procedures no parent should have to face.
“Story has to be on a breathing machine at night. I have to use cough-assist machines and feeding tubes. I’ve had to learn this in just a few days.
I don’t want to be their nurse. I just want to be their mum.”
Missed signs and painful realisations
Jesy explained how doctors initially reassured her after the twins were born prematurely at 31 weeks, urging her not to compare their milestones.
But it was her mother who first noticed the girls weren’t moving their legs as they should.
“I thought my mum was just worrying — but then they moved less and less… until they stopped.”
Further tests eventually confirmed SMA1 — the most severe form of the disease.
Jesy shared the devastating truth:
“If it’s not treated in time, your baby’s life expectancy may not reach two years old.”
Turning heartbreak into a fight for change
Since the diagnosis, Jesy has launched a petition to push for newborn screening for SMA at birth, explaining early treatment could have prevented the severity of her daughters’ condition.
Speaking in a hospital-filmed Instagram video, she told fans:
“It feels selfish to keep this to myself. I have a duty to raise awareness.
I could have saved their legs… I don’t think I’ll ever get over this.”
Jesy revealed she is “determined and ready to fight” for heel-prick testing to be added to standard newborn screenings.
“I’m grieving the life I thought we’d have”
Jesy welcomed Ocean and Story on May 15, 2025, after a traumatic pregnancy complicated by twin-to-twin transfusion syndrome (TTTS), which forced her into hospital for weeks and led to the twins spending time in NICU.
“The last few months have been the most heartbreaking of my life,” she admitted.
“I feel like I’m grieving a life I thought I was going to have with my children.”
Despite the pain, Jesy remains hopeful:
“I truly believe my girls will defy all the odds with the right help.”
This Morning airs weekdays from 10am on ITV1 and ITVX.
