Former Little Mix singer Jesy Nelson has shared devastating news about her infant twin daughters, revealing they have been diagnosed with a severe and life-limiting genetic condition.
A Mother's Heartbreaking Diagnosis
The 34-year-old star and her fiancé, musician Zion Foster, 27, welcomed their daughters, Ocean Jade and Story Monroe Nelson-Foster, in May 2024. After a difficult pregnancy, the family's joy has been overshadowed by a diagnosis of Spinal Muscular Atrophy (SMA) Type 1, the most severe form of the disease.
In an emotional video posted to Instagram, Nelson explained that the condition progressively kills the muscles in the body, leading to floppiness in the limbs, difficulties with breathing and swallowing, and severely delayed motor skills. She was told by specialists at Great Ormond Street Hospital that her daughters would likely never walk or regain full neck strength. "They will be disabled," she recounted.
The Critical Race for Early Treatment
Time is a critical factor in treating SMA. While groundbreaking treatments now available on the NHS can halt the disease's progression, they must be administered within the first weeks or even days of life to be most effective. Prior to 2019, many babies with SMA Type 1 did not survive beyond their second birthday.
Nelson's journey to a diagnosis was fraught with delays. Initially, concerns about the twins' movement and feeding were dismissed by healthcare professionals, who attributed delays to their premature birth. "I am grieving a life I thought I was going to have with my children," she said, describing the last few months as the "most heartbreaking time" of her life.
Thankfully, her persistence led to the diagnosis and her daughters have now received the vital treatment. "If they didn't have it they would die," she stated.
The Push for Routine NHS Screening and Private Options
Currently, babies in England, Wales, and Northern Ireland are not routinely screened for SMA at birth, meaning many diagnoses come too late for optimal intervention. Campaigners argue this must change urgently.
Portia Thorman from the charity SMA UK said it would be "ethically wrong" not to introduce nationwide screening. A two-year pilot programme for newborn SMA testing is due to begin in Scotland in 2026.
In the interim, parents concerned about SMA can seek private testing, though experts advise contacting SMA UK and hospital specialists for guidance first. Costs vary:
- Private Blood Tests London offers an SMN1 test for £924, with results in 10 days and no GP referral needed.
- Synnovis provides a similar test for £413, arranged via an NHS hospital, with results in three days.
- Medical Express Clinic on Harley Street charges £567 for a 10-day service.
Jesy Nelson ended her message with a note of defiant hope for her daughters: "I truly believe that my girls will defy all the odds." Her story highlights a crucial gap in UK healthcare that campaigners are fighting to close.
