ITV presenter Cat Deeley has publicly praised singer Jesy Nelson as one of the "strongest and bravest" women she has ever encountered. This heartfelt tribute follows Nelson's emotional appearance on This Morning, where she revealed her eight-month-old twin daughters have been diagnosed with a severe genetic condition.
A Mother's Fight for Early Diagnosis
Jesy Nelson's daughters, Ocean Jade and Story Monroe, have been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1). This rare neuromuscular disease causes progressive muscle weakness and wasting. Nelson explained that the family endured "the most gruelling three or four months" before receiving the diagnosis.
Critically, Nelson stated that with earlier detection and treatment, her daughters "could have saved their legs." She is now campaigning for SMA1 to be included in the standard NHS newborn heel prick test, offered when a baby is five days old. The non-invasive test is available in 45 countries, including the USA since 2023, and would cost the NHS an estimated 36p per child if implemented widely.
Political Support and a Mother's Anguish
The campaign has gained significant political traction. Wes Streeting, the Secretary of State for Health and Social Care, has pledged his support. Sharing an update on Instagram, he wrote: "Jesy Nelson and parents like her are amazing... I will be picking up the issues Jesy has raised around screening."
Nelson described the frustration of spotting early signs—such as the twins' bowed "frog legs" and unusual belly breathing—only to be reassured by health visitors and GPs that her premature babies might simply be delayed. "I potentially could have saved their legs. I don't think I'll ever be able to get over or accept it," she said emotionally on the programme. Doctors from Great Ormond Street have advised that the girls may never walk or regain full neck strength due to the delayed diagnosis.
The Critical Importance of Newborn Screening
Spinal Muscular Atrophy (SMA) is an inherited condition caused by a fault in the SMN1 gene. Without a crucial protein, motor neurons die, meaning the brain cannot control muscles. Around 70 children are born with SMA each year in the UK. Without treatment, fewer than 10% survive to age two.
Experts stress that early detection is critical. If treated pre-symptomatically at or near birth, the disease can be largely prevented, allowing children to develop with minimal symptoms. The UK currently screens for nine rare conditions in its newborn blood-spot test but does not include SMA, a situation charity SMA UK calls "shockingly far behind."
Following the interview, Cat Deeley took to Instagram to reshare the segment, writing: "Yesterday I had the pleasure of meeting one of the strongest, bravest and wisest women I have ever met. A mother’s love turns fear into fire." Nelson responded, thanking Deeley for her "beautiful kind words" and support, which she said "means the absolute world to me and all of the families fighting for this change."
