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Jesy Nelson’s partner Zion Foster has spoken out after the singer shared the news that their twin daughters have been diagnosed with Spinal Muscular Atrophy.
The genetic neuromuscular disease causes progressive muscle weakness and wasting due to motor neuron loss.
Now, taking to his Instagram Stories, Zion shared a photo of his daughters Ocean Jade and Story Monroe resting in what appeared to be a stroller.
Despite having tubes attached to their noses, the two tots could be seen smiling widely.
Alongside the image, Zion penned: ‘Still smiling through all the challenges. Daddy loves you so much.’
Earlier in the day, Jesy was tearful as she explained that the condition ‘affects every muscle in the body down to legs, arms, breathing and swallowing’, adding that ‘essentially what it does over time is it kills the muscles in the body.’
Choking back tears the singer told the camera: ‘If it’s not treated in time your baby’s life expectancy will not make it past the age of two.’
She went on to explain that Great Ormond Street have advised that the girls ‘are probably never going to be able to walk or regain their neck strength so they will be disabled.’
She added: ‘The best thing we can do right now is get them treatment and hope for the best.’
Jesy welcomed her twin daughters with partner Zion on May 15, 2025.
She spent much of her difficult pregnancy in hospital before the girls were delivered at 31 weeks which was followed by a stay in the NICU.
The singer opened her video by explaining that it was her mother who first noticed the twins were not moving as much as expected.
Jesy and Zion also realised the girls were struggling to feed properly, but were reassured by health visitors and GPs that as their babies were born premature they may be delayed in hitting certain milestones and not to compare their children to others.
‘After the most gruelling three, four months and endless appointments the girls have now been diagnosed with a severe muscular disease – SMA Type 1,’ she then explained.
‘Once the girls got treated, it was a very rapid process because time is of the essence with this disease’ Jesy said of the twins’ treatment plan from Great Ormond Street Hospital in London, adding that there is no cure for SMA.
She said the girls have had their treatment over the past few weeks which ‘I am so grateful for because without it they will die.’
‘It has just been endless hospital appointments, I feel like the hospital has become my second home and I feel like I have had to become a nurse because I have to put them on breathing machines and do stuff that no mother should have to do with their child.’
Jesy broke down as she admitted: ‘The last few months have been the most heartbreaking time of my life. I literally feel like my whole life has done a 360. I almost feel like I am grieving a life I thought I was going to have with my children.
‘I truly believe my girls will defy all the odds with the right help and do things that have never been done.’
She ended her video by explaining she wanted to make the post to help others and raise awareness of early diagnosis in children and the signs to look for which include floppiness in babies, bell-shaped bellies and rapid breathing.
She also stressed the need for a heel prick test at birth ‘which can literally save their legs, and so many parts of their body.’
Children are born with SMA if both parents have a faulty gene that causes the condition — one in 40 is a carrier.
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.
But in the past five years treatments have been approved for use on the NHS that can stop the disease in its tracks.
The catch is that they need to be started within the first weeks, or even days, of life.
As 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.
SMA stems from a fault with the SMN1 gene, which should stimulate the production of SMN protein that maintains the health of the nerve cells involved in the transmission of signals between the brain and spinal cord and the muscles, which control movement.
In the absence of this protein, these nerve cells (called motor neurons) die off and so the muscles — particularly in the legs, chest and arms — don’t get the message to move, and so waste away.
The nerve cells die off so swiftly that even short delays in treating SMA can make the difference between a baby growing up able to walk and develop normally, or becoming severely disabled.
With SMA type 1, 95 per cent of motor neurons can be destroyed before the age of six months.
However, there are three treatments that stop the disease progressing — if given in time — that have been approved on the NHS. The drugs can be life-changing but only if started within weeks of birth.
Experts say that if SMA was included in the newborn blood spot test — where a blood sample taken with a heel-prick at five days old is examined for nine genetic conditions including cystic fibrosis — infants with SMA could receive one of these treatments in time.
Yet the UK National Screening Committee (NSC), the body that advises government and the NHS about screening programmes, decided not to add SMA to the newborn screening programme in 2018 after concluding there wasn’t evidence to support the move.
Ocean Jade and Story Monroe were born at just 31 weeks old, after Jesy was diagnosed with twin-to-twin transfusion syndrome (TTTS) – a rare condition that can put one or both babies at risk.
Before being released from hospital the twins had been receiving treatment in a Neonatal Intensive Care Unit (NICU).
Jesy recently opened up about their premature births, telling fans: ‘Nothing or no one will ever be able to prepare you as a parent for NICU.
‘It’s the most scary overwhelming feeling of emotions not being able to feel like you can protect your babies.
‘Naturally as a mother you just want to hold them and comfort them when they cry but you can’t because there are what feels like a million wires coming out of them and tubes and masks in the way with people poking and prodding them, it breaks your heart into a million pieces.
‘Having them reunited for the first time ever today was the most magical feeling I will never be able to describe. The strongest little girls I’ve ever known who really do have the most inspiring story to tell.’
In March 2025 during her pregnancy, Jesy had to undergo an emergency procedure after suffering complications and was advised to remain in hospital until she was at least 32 weeks into her pregnancy.
Throughout the ordeal, her partner Zion admitted he and Jesy, who was seven months pregnant at the time of her procedure, had ‘grown to understand each other on a deeper level’.
He told OK!: ‘I think it’s at these times when you really, really know what love you have and what your relationship means.
‘And I think for me and Jess, this has just taken it to a whole other level of us knowing we are literally made for each other.’
He said the couple had also tried to make the hospital as much of a home as possible.
‘There’s a couch that turns into a bed that we pushed next to the hospital bed, so we’ve made our own double bed.
‘And it’s like we’ve moved in. The nurses just said, “Oh, my God. It looks so nice in here. It looks so homely.”‘
Jesy announced she was expecting twins with her boyfriend Zion back in January 2025 after rumours they had split.
Originally from South London, Zion was born and raised in a Nigerian household by his mother and grew up listening to Gospel music.
It was his football coach who then introduced the star to rap influences, and he began listening to Chris Brown, Lil Wayne and Usher.
Zion then decided to pursue music, recording his own tunes and sharing them online via SoundCloud.
