Jesy Nelson gives emotional update on baby twins after being diagnosed with 'severe' SMA1 disease
Jesy Nelson has shared an emotional update on her twin daughters' spinal muscular atrophy (SMA) condition.
The ex Little Mix singer revealed in January that her kids Ocean Jade and Story Monroe had been diagnosed with genetic neuromuscular disease SMA1.
SMA1 is 'a rare genetic condition that can cause muscle weakness' that 'gets worse over time', according to the NHS.
Without medical intervention, life expectancy is estimated at less than two years.
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In an update posted on Instagram on Thursday (19 March), the 34-year-old, who shares the twins with her ex-fiancé, Zion Foster, said her daughters have been fitted with leg splints.
"So today, I had to go pick up the girls' splints because their feet are pointing, and they need to be flattened out. It made me really sad," Jesy said.
The star then showed the tiny heart covered leg splints her daughters would be wearing: "Have you ever seen anything cuter in your life?
"Made me sad though, because it's just another reminder."
In a Q&A, Jesy previously explained how she wants to 'make a change' by deciding to carry on filming her Prime Video series.
"I just hope people continue to watch the next part of the journey. When the girls got their diagnosis, we decided that we wanted to continue filming," she added.
"As hard as it was, we were like, 'You know what? There's a reason you guys are here, and we've got to make the best out of this situation'."
Jesy - who walked away from Little Mix in 2020 due to mental health issues - continued: "I'm sure you guys are aware, like, I'm trying to get it [SMA] made part of the heel prick test.
"That's my main goal right now, as well as looking after my beautiful girls.
"I haven't even seen it back yet, but I already know it's going to be tough.
"But I'm just so happy that we've been able to document everything, because I really believe that we're going to make a change. Like, I feel it.
"I love how dedicated people are to spreading awareness about everything that I've been through and this [programme] is going to shed even more."
Jesy told the Great Company podcast that she hopes her babies will 'defy all the odds'.
"So spinal muscular atrophy is a muscular wasting disease, so they don't have a gene that we all have in our body," she said.
"Their muscles are now deteriorating and wasting away, and if you don't get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two.
"It's not okay, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation.
"And my girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds."
Anish Vij