Former Little Mix star Jesy Nelson has posted a poignant new picture of her twin daughters during a winter walk, following her recent emotional revelation that the babies have been diagnosed with a severe genetic condition.
A Family's Winter Walk Amid Heartbreak
The 34-year-old singer shared an image on Instagram this week showing her bundled-up twins, Ocean and Story, lying in their pram during a sunny outing. The photograph also shows the infants with feeding tubes, a necessary support for children with their condition.
This comes just days after Nelson, in a tearful video, told her fans that her daughters have Spinal Muscular Atrophy (SMA) Type 1, the most severe form of the rare muscle-wasting disease. She explained that the condition means her children may never walk and has a devastating impact on breathing and swallowing.
The Devastating Reality of SMA Type 1
Nelson welcomed her twins in May last year at 31 weeks. She initially attributed their slower development to prematurity, but her mother grew concerned. "I am grieving a life I thought I was going to have with my children," the singer admitted, struggling to hold back tears.
SMA Type 1 affects around 50 babies born in the UK each year. If untreated, life expectancy typically does not surpass two years. Nelson expressed her profound frustration, stating she had noticed signs—like the babies' "frog leg" position and unusual belly breathing—before knowing what SMA was.
"My house looks like a hospital," she said, describing the intensive care her daughters now require. The condition delays motor skills, weakens limbs, and complicates basic functions like eating, which is why her girls use feeding tubes.
The Mirror's Campaign for Change
In response to Nelson's story, the Daily Mirror has launched a vital campaign. The newspaper is demanding the Government add a £5 blood test for SMA to the standard newborn heel prick test offered by the NHS.
Currently, in the UK, babies without an older sibling with SMA are often not diagnosed until parents repeatedly seek help for symptoms like an inability to lift the head. The Mirror revealed that an estimated 50 babies a week are born with muscle-wasting conditions, with most not diagnosed at birth.
Pharmaceutical firm Novartis estimates that 33 of these children will be left in a wheelchair due to late diagnosis. Early screening, already adopted by most other developed nations, allows for life-changing treatment before irreversible paralysis occurs.
Jesy Nelson's brave decision to share her family's struggle has ignited a crucial public conversation about newborn screening, putting pressure on health officials to act and prevent other families from facing the same heartbreaking prognosis.
