Jesy Nelson is advocating for newborn screening for Spinal Muscular Atrophy (SMA) type 1, believing that early diagnosis and treatment could have significantly improved the health of her twin daughters.
On Sunday, 34-year-old Jesy Nelson, formerly of Little Mix, shared that her eight-month-old twin daughters, Ocean Jade and Story Monroe, have been diagnosed with Spinal Muscular Atrophy. She described the past three to four months as incredibly difficult.
This inherited disease affects the nerves and muscles, leading to increasing weakness and muscle loss over time as nerve cells that control muscles deteriorate.
Jesy became emotional while describing her condition, explaining that it impacts all of her muscles – including those used for breathing, swallowing, and moving her arms and legs. She explained that over time, the condition weakens and destroys muscle tissue.
The singer recently shared a health update and announced she’s started a petition to have all newborn babies screened for Spinal Muscular Atrophy (SMA). She says she’s committed to getting the petition approved and making this screening standard practice.
Okay, so I’ve been researching Spinal Muscular Atrophy type 1 – SMA1 – like crazy, and it’s amazing! If you can catch it early, like right at or soon after birth, before any symptoms even show up, it can be almost completely stopped! Seriously, so many kids then grow up with hardly any problems, or even no symptoms at all! It’s incredible, and gives me so much hope!
In a new video posted to Instagram from the hospital, Jesy expressed her sincere gratitude for the overwhelming support and kind messages she and other families facing a difficult diagnosis have received.
I’m truly overwhelmed by all the support I’ve received, and I want to express my sincere gratitude. Thank you so much for sharing, taking the time to learn about it, watching, and sending such kind messages – I really appreciate it.
I’m starting a petition to include a heel prick test for newborns as part of standard newborn screening. I’m really committed to making this happen and will do everything I can to advocate for it.
I’m still waiting to hear back about everything, but I’ll let you know as soon as I do. I’m also going to be on This Morning tomorrow to talk about my daughters. I’m so grateful for all your love and support – it means the world to me. We still have a journey ahead, but I appreciate you all so much.
Jesy shared on Sunday that doctors first brushed off her worries about her twins’ development, explaining they were born early and hadn’t yet reached typical milestones.
In a heartfelt Instagram video, she shared that her mother first noticed the twins weren’t moving their legs as much as expected.
Jesy then brought the children to the doctor for checkups, and regular health visitors had also examined them.
She shared that a few months prior, her mother had observed the girls weren’t moving their legs as much as expected.
I wasn’t worried about it then. Right after leaving the NICU, I was repeatedly told that because my babies were born prematurely, I shouldn’t compare their development to that of other babies.
Everyone develops at their own pace, so accept them for who they are and trust that they’ll achieve their goals in their own time.
When Jesy and Zion had worries about how their baby was feeding, their health visitor helped calm their concerns.
Despite their concerns, they were assured the babies were doing well and were perfectly healthy.
After later undergoing further tests, they were given the SMA Type 1 diagnosis.
Fighting back tears, the singer shared in a video that without prompt treatment, her baby wouldn’t be expected to live past the age of two.
She explained that doctors at Great Ormond Street Hospital have advised that the girls will likely have permanent disabilities, including an inability to walk or regain control of their necks.
She added: ‘The best thing we can do right now is get them treatment and hope for the best.’
Jesy welcomed her twin daughters with partner Zion on May 15, 2025.
She had a challenging pregnancy and was hospitalized for much of it. Her twin daughters were born prematurely at 31 weeks and then needed care in the neonatal intensive care unit (NICU).
After a difficult three or four months filled with many doctor’s appointments, my daughters have finally been diagnosed with a serious muscle condition called Spinal Muscular Atrophy Type 1 (SMA Type 1), I shared in a video.
Jesy explained that the twins received treatment quickly, which is crucial for Spinal Muscular Atrophy (SMA). Unfortunately, there’s currently no cure for the condition, but fast treatment is vital.
She explained that the girls received treatment over the last few weeks, and she’s incredibly thankful for it, as their lives depend on it.
It’s been a constant cycle of hospital visits, to the point where the hospital feels like a second home. I’ve ended up having to learn medical tasks, like operating breathing machines for my child, which is incredibly difficult and something no parent should have to do.
Jesy became very emotional as she shared that the past few months have been incredibly difficult. She described feeling like everything had changed completely, and admitted she felt as though she was mourning the future she had imagined for herself and her children.
I’m confident that with the proper support, my daughters will overcome any challenge and achieve incredible, unprecedented things.
She concluded her video by sharing that her goal was to help others and increase understanding of early diagnosis in children. She highlighted important signs to watch for, such as floppiness, a swollen belly, and fast breathing in babies.
She highlighted the importance of the newborn heel prick test, explaining it could prevent serious health problems and potentially save a baby’s life and limbs.
Ocean Jade and Story Monroe arrived early, at 31 weeks, after their mother, Jesy, received a diagnosis of twin-to-twin transfusion syndrome (TTTS). This uncommon condition can be dangerous for one or both babies in a twin pregnancy.
Before going home, the twins had been cared for in the hospital’s Neonatal Intensive Care Unit (NICU).
As a long-time fan, it really touched me to hear Jesy talk so honestly about her babies being born prematurely. She shared that absolutely nothing can prepare you for the experience of having a child in the NICU, and honestly, that just feels so real. It’s a powerful reminder of how incredibly challenging it can be for parents going through that, and I admire her for being so open about it.
In March 2025, while pregnant, Jesy experienced complications that required emergency treatment. Doctors recommended she stay in the hospital until she was at least 32 weeks pregnant.
During the difficult time, Jesy’s partner, Zion, shared that he and Jesy—who was seven months pregnant when she had the procedure—had become closer and understood each other better.
Jesy revealed in January 2025 that she and her boyfriend, Zion, were expecting twins, despite previous rumors of a breakup.
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2026-01-06 21:50