Former Little Mix member Jesy Nelson has revealed her twin daughters, Ocean Jade and Story Monroe, have been diagnosed with Spinal Muscular Atrophy (SMA), sharing they will “probably never walk”.
In an emotional Instagram video, shared on Monday, Nelson revealed she found out about her daughter’s diagnosis “after the most gruelling three, four months and endless appointments”.
“A few months ago, my Mum noticed that the girls were not showing as much movement in their legs as they should be, which wasn’t really a concern to me at the time because from the minute that I left NICU, I was told, ‘Your babies are premature, so do not compare your babies to other babies,'” the singer began.
“It didn’t really, to be honest, ring alarm bells to me, they’re my first set of children and like I said, I’d been told don’t compare your babies to other babies because they’re premature. Also, when the healthcare visitors had come, we were told they look great, they’re healthy, you know, everything’s fine.”
However, after her girls struggled to feed, Nelson began to worry and took her daughters to her local GP. After multiple visits and tests, Ocean and Story were diagnosed with SMA Type 1.
“For those of you that don’t know what SMA type 1 is, it is the most severe muscular disease that a baby can get,” Nelson said.
“It stands for Spinal Muscular Atrophy, which can affect — well, it does affect every muscle in the body, down to legs, arms, breathing, swallowing and essentially what it does is over time it kills the muscles in the body.
“If it’s not treated in time, your babies’ life expectancy will not make it past the age of two.”
The singer then broke down in tears, recalling the moment she and her fiancé Zion Foster were told “they’re probably never going to be able to walk, they probably will never regain their neck strength”.
“They will be disabled,” she said.
“The best thing we can do right now is to get them treatment and then just hope for the best.”
Nelson went on to add she’s extremely grateful for the treatments the girls have received. However, the “endless amounts of hospital appointments” have made it feel like it’s become her “second home”, and that she’s become a “nurse within the space of two weeks” following the diagnosis.
“I’ve like almost had to become like a nurse within the space of like two weeks of getting their diagnosis because I now have to put them on breathing machines and do lots of stuff that no mother really should ever have to do for their child,” Nelson continued.
“The reason I wanted to make this video was because the last three months have honestly been the most heartbreaking time of my life.
“I literally feel like my whole life has done a 360.”
Further in her video, Nelson said she was “grateful” that her girls were able to get the treatment and that she “truly believes that [her] girls will defy all the odds”.
Jesy Nelson raises SMA awareness
At the end of her heartbreaking video, Nelson advocated early SMA detection, encouraging parents to have their children checked for the disorder.
“I want to make this video is because it’s just frustrating because there’s so many children that have been detected from birth because they’ve had a heel prick from birth and they’ve been detected that they have SMA type 1 and then they’ve had the treatment and then these children have gone on to walk, they’ve gone on to live how children should live,” Nelson added.
“I just think that if I can raise as much awareness about this as possible and the signs, then you know, something good has to come out of this,” Nelson said.
“Don’t think anyone understands how much this can change your child’s life. It can literally save their legs, it can save so many parts of their body and essentially stop them from dying.”
Nelson and Foster announced the birth of their daughters last year in May, revealing they’d been born prematurely at 31 weeks.
“Nothing or no one will ever be able to prepare you as a parent for NICU,” she wrote in the May 26 post.
“Having them reunited for the first time ever today was the most magical feeling I will never be able to describe. The strongest little girls I’ve ever known who really do have the most inspiring story to tell.”
Nelson’s recent post on the twins’ diagnosis has since been filled with comments of support, with fans and fellow celebrities sending prayers, love and well wishes to the young family.
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