Jesy Nelson says her daughters are ‘bravest girls’ as they have tubes removed
The Little Mix star’s daughters, Ocean Jade and Story Monroe, were diagnosed with spinal muscular atrophy and need feeding support as part of their early medical care.
Jesy Nelson said her daughters were the “bravest girls” ahead of an operation to have their nasogastric feeding tubes removed.
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The Little Mix star’s daughters, Ocean Jade and Story Monroe, were diagnosed with spinal muscular atrophy (SMA), a rare condition that causes muscle weakness.
The condition required Nelson’s daughters to be given feeding support as part of their early medical care.
Read More: Jesy Nelson says rollout of baby SMA screening is a 'day of hope' after her relentless campaign
Nelson, who had her twins with her former partner Zion Foster, posted a video of herself in hospital with Ocean and Story before the procedure to remove the tubes.
Caressing her daughter’s face, she said: “Today is the big day. We’re taking these plasters off aren’t we? No more tuby for you in your face.”
Addressing her social media followers, she added: “They’re going down soon. The bravest girls in all of the world.”
On Thursday, the singer shared a photo of her twins and said it was the last day they would use the feeding tubes.
She wrote: “Today is the last day of my baby girls having their tubes on their faces.
“As terrified as I am about them having their operation tomorrow, I cannot wait to finally see their faces again and see their little dimples that are always hidden under these plasters.
“I’ve honestly forgotten what it feels like to cuddle them and not worry about pulling their tube out of their nose or plasters off their face.
“It really is the littlest things we take for granted as parents.”
According to the NHS, SMA can cause problems including muscle weakness, difficulty sitting up, crawling or walking, problems breathing or swallowing and bone and joint issues.
Nelson’s twins have Type 1 SMA, which begins in babies under six months old.
She revealed her daughters had the rare genetic condition in January, saying they are unlikely to be able to walk or gain neck strength.
Since the twins’ diagnosis, Nelson had been campaigning for the condition to be added to the newborn, blood spot screening test as early treatment can help avoid some of its most devastating effects.
The Department of Health announced in July that the national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of this year.
Hundreds of thousands of babies will be screened as part of the simple, heel-prick blood test shortly after birth.