Jesy Nelson became emotional as she revealed the latest development with her twin daughters following their SMA1 diagnosis.
The former Little Mix singer shares twins Story and Ocean, who were born in May last year, with her ex-fiance Zion Foster. Months later, the girls were diagnosed with spinal muscular atrophy, which affects their ability to walk.
She has previously said their prognosis means they are unlikely to make it to their third birthday.
On Thursday, Jesy, 34, told her Instagram followers that the twins have now been fitted with leg splints to support their joints.
‘So, today I had to go and pick up the girls’ splints because they’re feet are pointing this way and they need to be flattened out and it made me really sad,’ Jesy said in her Instagram stories.
Holding up both of her daughters’ colourful splints, the singer added: ‘But have you ever seen anything cuter in your life, look at them.
‘This one is Story, she has hearts and Ocean has butterflies. It made me sad though, it’s just another reminder.’
Jesy, who is currently busy filming season two of her Amazon Prime Video docu-series, had recently shared footage of the twins doing ballerina exercises to keep their legs mobile. In addition to crawling and walking, SMA1 can also cause problems with breathing and swallowing, muscle weakness and tremors.
The Bad Boyz singer first revealed their diagnosis in January, tearfully explaining to her followers how her mum realised that Story and Ocean weren’t moving their legs as much as they should have been for their age.
‘It wasn’t really a concern to me at the time because from the minute I left NICU (Neonatal Intensive Care Unit), I was told ‘your babies are premature, so do not compare your babies to other babies,’ Jesy said at the time.
‘They won’t reach the same milestones, take them as they are and they will get where they need to be when they do.’
Over the past few months, Jesy has been on a mission to raise awareness for the disease and to push the NHS to rollout the standard heel prick test to screen for SMA1, which costs just £1, and could be life-saving.
In February, Jesy reached a milestone as the petition she launched to get SMA added to post-birth health checks hit 100,000 signatures.
Doctors have told her that Ocean Jade and Story Monroe will never regain their neck strength and will likely never walk.
SMA has different types, which indicate the severity and, therefore, life expectancy of a patient.
Those with infantile SMA, like Jesy’s children, rarely survive past the age of two, although this has increased with modern treatments.
Got a story?
If you’ve got a celebrity story, video or pictures get in touch with the Metro.co.uk entertainment team by emailing us celebtips@metro.co.uk, calling 020 3615 2145 or by visiting our Submit Stuff page – we’d love to hear from you.