Jesy Nelson, 34, and her fiancé Zion Foster, 27, have revealed that their twin daughters, Ocean Jade and Story Monroe Nelson-Foster, born on May 15, have been diagnosed with spinal muscular atrophy (SMA) Type 1, a severe form of the disease that causes muscle wasting and can be fatal within two years without treatment.
In an Instagram post, Jesy shared the heartbreaking news from Great Ormond Street Hospital: 'We were told they were never going to be able to walk. They would probably never regain their neck strength. They will be disabled.' She added that the girls have received treatment, without which they would die.
Rosie and Wes, parents from Driffield, East Yorkshire, who run the Facebook page 'Marley's Journey', have shared their own experience with SMA to support Jesy. Their five-year-old son Marley, diagnosed at five months, cannot walk or talk and requires respiratory support, while their six-month-old daughter Meadow, screened at birth, received gene therapy early and is meeting all developmental milestones.
Rosie emphasised the importance of early screening: 'The earlier you find out about newborn SMA, the earlier your life turns around. Marley has complex needs. Meadow is going to live a completely normal life.' The couple is backing a campaign by SMA UK to add SMA to the newborn blood spot test, which currently checks for 10 rare conditions but not SMA, except for siblings of affected children.
According to SMA UK, an estimated 47 babies were born with SMA in the UK in 2024, and one in 40 people carries the altered gene. The UK National Screening Committee previously recommended against universal screening in 2018, but an external review is now underway.
