Jesy Nelson appeared on This Morning today (January 7), sharing an update on her twin daughters Ocean and Story.
The singer’s appearance came after she revealed that the girls had recently been diagnosed with a severe muscle disease called SMA.
In a previous upload on social media, Jesy explained that, due to the condition, it’s likely the girls will never walk and “will be disabled”. She also explained that, had the girls hada heel prick test for the condition at birth, treatment could’ve prevented the disease progressing.
She said: “Essentially, what it does is, over time, it kills the muscle to the body. And if it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
Today, Jesy spoke to This Morning hosts Ben Shephard and Cat Deeley, giving them an update on the girls. She shares the twins with fiancé Zion Foster. The girls are now eight months old, having arrived nine weeks early after an incredibly difficult pregnancy.
Jesy Nelson shares update on her twins on This Morning
In an emotional interview, Jesy revealed why she posted the video sharing the girls’ diagnosis.
She said: “Maybe, if the shoe was on the other foot, and I’d have seen somebody else’s video, maybe I could’ve prevented this from happening if I’d have seen a video and caught it early enough. Yes, I could’ve dealt with it privately. But I have this platform and feel I almost have a duty of care to raise awareness about it. It feels selfish to keep this to myself and not potentially save a life. The thing that’s mad to me is that I saw all of the signs before I knew what SMA was.”
She added that she didn’t think to connect the dots as she was told that the girls would develop more slowly due to them being born prematurely. “It’s frustrating knowing that if this was the card I was always going to be dealt and there was nothing I could do about it then it’s almost easier for me to accept. But when you know there’s something that can be done and it’s life-changing to your child, that’s the part I cannot accept. And that’s why I’m going to shout from the rooftops about this.”
Ocean and Story’s prognosis revealed
Ben and Cat then asked Jesy what the girls’ treatment plan and prognosis is.
“They’ve had their treatment. A one-off infusion. What that does is it puts the gene back in their body that they don’t have. It stops any of the muscles that are still working from dying. But any that are gone, you can’t regain them back. Now it’s just constant physio,” she explained.
Jesy then added: “We’ve been told they’ll probably never walk. They’ll never regain their neck strength. And they’ll be in wheelchairs.”
However, she added: “Listen. There’s been so many stories where parents have been told this and their children have gone on to do incredible things. They’re still smiling, they’re happy, they have each other and that’s the thing I’m so grateful for. They’re twins and they’re going through this together. And I think that’s beautiful.
“All I can do is try my best to be there for them, with positive energy, keep doing physio.
“If you come to my house, it’s like a hospital. The hallway is filled up with medical stuff and it’s just crazy how you can go from one extreme to the next. Bless little Story, she has to be on a breathing machine at night because she isn’t strong enough to breathe by herself at night. I have to put them on a machine to help them cough. I have to put feeding tubes down their nose, get out secretions off their chest.”
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‘I just want to be their mum’
Admitting she’s “struggling” and has to visit Great Ormond Street Hospital twice a week, Jesy said she wishes she could just be the girls’ mum.
Becoming emotional, she shared: “It’s just so much to deal with while you’re also trying to deal with this horrendous thing that’s just happened. I’m still struggling with it. I just want to be their mum. I don’t want to be their nurse.”
Read more: Jesy Nelson faces backlash as she announces she’s filming a documentary following birth of twins
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