Jesy Nelson is sharing a heartbreaking update. The former Little Mix member and X Factor champion recently took to Instagram to reveal that her 8-month-old twin daughters may never walk.
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Nelson and her fiancé, Zion Foster, welcomed Ocean Jade and Story Monroe back in May. The singer experienced complications during her pregnancy, and the girls were born prematurely at 31 weeks.
Nelson’s mom first noticed that the girls “were not showing as much movement in their legs as they should be.” Because they were born prematurely, Nelson had been told they wouldn’t reach typical milestones on time, so she wasn’t initially concerned.
Things escalated a bit when Nelson noticed that the girls weren’t feeding as frequently as they should. After “the most grueling three, four months and endless appointments” the girls were diagnosed with a rare genetic condition called Spinal Muscular Atrophy (SMA) Type 1.
“It is the most severe muscular disease that a baby can get,” Nelson explained. “… It does affect every muscle in the body down to legs, arms, breathing, swallowing. Essentially what it does is, over time, it kills the muscles in the body. If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
After receiving the diagnosis, the parents were told that their daughters are “probably never going to be able to walk. They probably will never regain their neck strength, so they will be disabled. The best thing we can do right now is to get them treatment and then just hope for the best.”
Jesy Nelson Speaks Out About Her Daughters’ Diagnosis
Since receiving the diagnosis, the girls have begun their treatments. As for Nelson, she’s “become like a nurse within the space of 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 on their child.”
In the wake of the diagnosis, Nelson said that she feels like “my whole life has done a 360” as she’s had to grieve “a life that I thought I was going to have with my children.”
“I know I have to be grateful, because at the end of the day, they’re still here. That’s the main thing. They’ve had their treatment,” she said. “I truly believe that my girls will defy all the odds, and, with the right help, they will fight this and go on to do things that have never been done.”
Nelson went on to note that she decided to make the video because “if this is detected early enough in the first few months of a baby’s life, a lot of this stuff can be prevented.”
“I just think that if I can raise as much awareness about this as possible and the signs, then something good has to come out of this,” Nelson said, before sharing that some signs include floppiness, inability to hold themselves up, legs in a frog-like position, and bell-shaped bellies.
In the caption of the clip, Nelson noted, “This means more than I can explain. PLEASE take time out and watch this. If you listen to one thing today, let it be this. Sharing something deeply personal and important please take some time to watch and share if you can.”
Photo by Ricky Vigil M / Justin E Palmer/GC Images
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