Jesy Nelson has shared a tearful update after her twin daughters were diagnosed with spinal muscular atrophy (SMA) type 1, a severe genetic condition that weakens muscles over time.
The former Little Mix star welcomed twins Ocean Jade and Story Monroe Nelson-Foster in May 2025. Her pregnancy was already difficult. Nelson, 34, developed twin-to-twin transfusion syndrome (TTTS), a rare condition in identical twin pregnancies where shared blood flow becomes uneven. She underwent surgery, and the girls were later born prematurely, spending about four weeks in the NICU.
In an Instagram video, Nelson said her mum first noticed the babies weren’t moving their legs very much. That concern led to months of hospital appointments and tests. Doctors then confirmed SMA type 1, which affects muscles throughout the body, including those used for movement and swallowing.
Nelson said doctors stressed that treatment must happen quickly. She explained that without timely care, the condition can drastically shorten a child’s life. After assessments at Great Ormond Street Hospital, she said the family was told the girls may never be able to walk and will likely live with disability.
Nelson also pointed to early signs of SMA type 1, which can appear in the first six months of life. These can include low muscle tone, limited head control, and—sometimes—problems with swallowing and breathing.
She said the twins have now received treatment and the hospital has become her “second home.” Describing the past few months as the most heartbreaking time of her life, Nelson added that she believes her daughters can still “defy the odds” with the right support.