Jesy Nelson has opened up about her twin daughters’ devastating genetic condition and how they may never walk in an emotional interview on ITV’s This Morning
Jesy Nelson has revealed the extreme lengths she takes to make sure her twins can breathe at night following their devastating muscular atrophy diagnosis. The Little Mix star announced on Sunday that her twins had been diagnosed with the rare genetic condition spinal muscular atrophy and may never walk.
The 34-year-old welcomed daughters Ocean Jade and Story Monroe Nelson-Foster prematurely back in May with her musician fiancé Zion Foster, 27. Speaking in a video on Instagram at the weekend, Jesy told her fans that Ocean and Story have the most severe form of the disease, which sees muscles deteriorate over time, and that she’s now a nurse to the twins.
She added that she took them to the GP when her mum noticed they weren’t moving as much as they should. “The girls have been diagnosed with a severe disease called SMA type one. It stands for spinal muscular atrophy which affects every muscle in the body from legs, arms to swallowing,” she said.
Speaking on This Morning today, Jesy revealed that her twins exhibited early symptoms of SMA – but she didn’t know what they meant. Fighting tears, she told Ben Shephard and Cat Deeley: “That is the part that frustrates me the most. I knew and saw all of the signs before I knew what SMA was.
“It was weird because from when I was in NICU [Neonatal Intensive Care Unit], the way they used to lay on my chest, they would have frog leg position. I did say to my mum, ‘Isn’t their belly an unusual shape? They breathe from their belly.’
“That’s what frustrating – for me, if these were the cards I was always going to be dealt and there was nothing I could do about it, it would be easier for me to accept. But when you know there is something that can be done about it and it is lifechanging to your child, that’s the bit that I cannot accept.”
She added that it makes her “so sad” to watch videos which show the twins gradually losing use of their legs over the course of weeks. “That’s how quick it is and that is why it’s so important to get treatment from birth,” she said.
Jesy went on to reveal that her house was “looks like a hospital” with all of the medical equipment needed to keep the twins alive.
“Story has to be on a breathing machine at night because she isn’t strong enough to breathe by herself at night,” she said. “They have to have Cough Assist machines to help them cough, I have to put feeding tubes down their nose to get secretions off their chest.
“I’ve had to learn this within the space of a few days of getting their diagnosis. It’s so much to deal with while you’re also trying to deal with this horrendous thing that’s just happened.”
Sharing an update on the twins, she said that doctors have told her that they won’t be able to walk, regain neck strength and will be in wheelchairs. However, Jesy isn’t giving up hope.
“There have been so many stories where parents have been told this and then their children have gone on to do incredible things,” she said.
“So I believe you have to manifest this into existence. They’re still smiling, they’re still happy and they have each other.”
If you have been affected by this story, advice and support can be found at SMA UK. You can get in touch by phoning 01789 267520 or by emailing [email protected].
