Jesse Nelson became emotional as she revealed the latest development with her twin daughters after their SMA1 diagnosis.
The former Little Mix singer shares twins Story and Ocean, who were born in May last year, with him ex-fiancé Zion Foster. Months later, the girls were diagnosed with spinal muscular atrophy, which affects their ability to walk.
She has previously said that their prognosis means they are unlikely to make it to their third birthday.
On Thursday, Jesy, 34, told her Instagram Followers of the twins now have ankle joints fitted to support their joints.
“So today I had to go and get the girls’ ankles because their legs are going this way and they need to be flattened and it made me so sad,” Jesy said on her Instagram stories.
Holding up both her daughters’ colorful scarves, the singer added: “But have you ever seen anything cuter in your life, look at them.
“This is Story, it has hearts and the Ocean has butterflies. It made me sad though, it’s just another reminder.’
Jesy, who is currently busy filming her second season Amazon Prime Video The documentary series recently shared footage of the twins doing ballerina exercises to keep their legs mobile. In addition to crawling and walking, SMA1 can also cause breathing and swallowing problems, muscle weakness, and tremors.
The Bad Boyz singer first revealed their diagnosis in January, tearfully explaining to her followers how her mum realized Story and Ocean weren’t moving their legs as much as they should have for their age.
“It wasn’t really a concern for me at the time because from the moment I left the NICU (Neonatal Intensive Care Unit), I was told ‘your babies are premature, so don’t compare your babies to other babies,'” Jesy said at the time.
“They’re not going to hit the same milestones, they’re going to take them as they are and get to where they need to be when they get there.”
Over the past few months, Jesy has been on a mission to raise awareness of the disease and push the NHS to introduce the standard heel prick test to check for SMA1, which costs just £1 and could save lives.
In February, Jesy reached a milestone when the petition she started to add SMA to postnatal health checks reached 100,000 signatures.
PHYSICIAN she has been told 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 thus the 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.
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