Jesy Nelson was overcome with emotion on This Morning as she revealed the devastating reality of her twin daughters’ diagnosis — admitting that missed symptoms may have robbed them of the chance to ever walk.
The former Little Mix star, 34, appeared on the ITV show alongside Cat Deeley and Ben Shephard, where she spoke publicly for the first time since confirming that her eight-month-old twins, Ocean Jade and Story Monroe, have spinal muscular atrophy (SMA Type 1) — the most severe form of the rare genetic condition.
Struggling to hold back tears, Jesy admitted she lives with unbearable guilt. She said she believes earlier awareness could have changed everything, confessing that if she had seen the right information sooner, she might have been able to prevent what happened.
Since the diagnosis, Jesy said her life has been completely turned upside down. She described how her home now feels more like a hospital, with medical equipment lining the hallway, saying it’s shocking how quickly life can swing from joy to trauma.
Born 31 weeks premature last May, Ocean and Story now require round-the-clock care. Jesy revealed that one of her daughters needs breathing support overnight because she is not strong enough to breathe on her own, while both babies require feeding tubes — skills Jesy had to learn within days of receiving the diagnosis.
The moment that breaks her the most, she admitted, is no longer being able to just be a mum. She said all she wants is to care for her girls as their mother, not as a nurse — and that reality is something she finds deeply painful.
Jesy explained that she had repeatedly raised concerns about her daughters’ breathing and noticed they were moving their legs less each week. However, she was reassured that their struggles were simply due to being born prematurely and developing more slowly.
That explanation has left her devastated. Jesy said she will never accept the diagnosis, adding that knowing something could have been done — and that early treatment could have been life-changing — is the part she cannot come to terms with.
Determined to turn her pain into purpose, Jesy is now campaigning for SMA screening to be included at birth across the UK. She has launched a petition calling for the condition to be added to the newborn blood spot screening — commonly known as the heel-prick test.
With nearly 10 million followers, Jesy said she feels a responsibility to speak out, explaining that keeping quiet would feel selfish if it meant another child might miss the chance to be saved.
Scotland has already announced it will begin screening newborns for SMA from spring, but the test is not currently available elsewhere in the UK. Health Secretary Wes Streeting has publicly backed Jesy’s campaign, saying she is right to challenge how long diagnoses can take.
Jesy rose to fame after winning The X Factor in 2011 alongside Leigh-Anne Pinnock, Perrie Edwards and Jade Thirlwall. She left Little Mix in 2020 and has since pursued a solo career.
In recent days, Jesy has also shared emotional videos on Instagram thanking fans and families affected by SMA for their overwhelming support, promising she will fight “as much as I can” to change the system — not just for her daughters, but for every child who comes after them.
