Little Mix star Jesy Nelson’s baby twins have been diagnosed with Spinal Muscular Atrophy. Early treatment is essential but testing is not routinely offered by the NHS
Jesy Nelson’s twins have received a devastating diagnosis(Image: Instagram)
Time is of the essence with certain genetic conditions that affect newborns, and early treatment can mean the difference between life and death.
Spinal Muscular Atrophy is one of those illnesses, and today, Little Mix star Jesy Nelson shared the heartbreaking news that her twins have both been diagnosed with the rare genetic condition and may never walk. The 34-year-old singer and her musician fiancé Zion Foster, 27, welcomed daughters Ocean Jade and Story Monroe Nelson-Foster in May after a difficult pregnancy.
Fighting back tears, she shared a video to Instagram to say her girls had the most severe form of the disease which kills muscles in the body over time. SMA causes floppiness in the limbs, difficulty breathing and swallowing as well as delayed motor skills.
Prior to 2019, babies with SMA type 1 often wouldn’t survive until their second birthday, and infants with the milder type 2 would never walk, facing life in a wheelchair as well as multiple surgeries and respiratory infections. In the past five years treatments have been approved for use on the NHS that can stop the disease in its tracks – the earlier the treatment is given then the less the damage will be.
Jesy Nelson’s partner Zion said the girls were ‘smiling through the challenges’
However the tests need to be started within the first weeks, or even days, of life. Babies in the UK aren’t tested for SMA, for many the diagnosis comes too late for this. Campaigners and senior experts are pushing for that to change. Testing for all babies is due to begin in Scotland in 2026 under a two-year pilot programme. Portia Thorman, from SMA UK, believes it would be ”ethically wrong” not to introduce screening throughout the UK. “I think facing a diagnosis now, you can be filled with hope,” she says.
In the meantime, parents should contact SMA UK, as well as their treating hospital, for guidance as not all private tests will be suitable for babies and results are always best interpreted by a trained professional. Costs to go private range between £413 to £900. Private Blood Tests London offers an SMN1 deletions/duplications test for £924 with results back in 10 days. No GP referral is needed. A similar test by Synnovis has a price tag of £413 but will need to be arranged through your NHS hospital. Results come back with in three days. Harley Street’s Medical Express Clinic charges £567 with results in 10 days.
Jesy first went to her GP after her mum noticed the twins were not moving as much as they should be for their age. Having been advised that the babies will show slower development as they were premature, Jesy said she told herself not to “compare them” to other babies of the same age. After pushing for answers, Jesy’s twins were diagnosed with SMA Type 1.
Sharing the news on Instagram, Jesy said: “I wanted to come on here to share some news with you guys. I’m not actually sure where to start with this video.
“A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be. It wasn’t really a concern to me at the time. From the minute I left NICU I was told, ‘Your babies are premature so don’t compare your babies to other babies. They won’t reach the same milestones just take them as they are.’
“It didn’t really ring alarm bells to me. They are my first set of children and I was told not to compare to them. Health care visitors insisted everything was fine and the girls were healthy.
“There were a few signs later on that the girls were struggling to feed properly. We would take them to the GP and say ‘Our babies are not feeding as frequently as they should.’ They said it was fine and to try little and often.”
Jesy went on: “Long story short, after the most gruelling three to four months and endless appointments, the girls have been diagnosed with a severe disease called SMA Type One. It stands for Spinal Muscle Atrophy which affects every muscle in the body from legs, arms, swallowing. Over time it kills the muscles in the body. If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.
“Once the girls got treated it was a very rapid process, time is of the essence with this disease,” said Jesy. “When they assessed the girls at Great Ormond Street, we were told they were never going to be able to walk. They would probably never regain their neck strength. They will be disabled.
“The best thing we can do right now is to get them treatment and hope for the best,” she added. “Thankfully the girls have had their treatment which I’m so grateful for. If they didn’t have it they would die.”
There is currently no cure for (SMA), but there are treatments and support available to help people have the best possible quality of life. Children are born with SMA if both parents have a faulty gene that causes the condition — one in 40 is a carrier.
Explaining how her life has been turned upside down in the last four months, Jesy said: “I am grieving a life I thought I was going to have with my children.
“The hospital has become my second home. I feel like I’ve had to become a nurse within two weeks of getting the diagnosis. I’ve had to do stuff no mother should have to do to their child.
“I made this video because the last three months have been the most heartbreaking time of my life.”
Breaking down in tears, Jesy said: “I know I have to be grateful. At the end of the day they are still here and that’s the main thing. They’ve had their treatment. I truly believe that my girls will defy the all the orders and with the right help they will fight this.”