Jesy Nelson is getting support from MP Wes Streeting for her campaign to add screening for Spinal Muscular Atrophy type 1 (SMA1) to newborn testing. This push comes after her twins were diagnosed with the muscle-weakening disease.
This week, 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.
Spinal Muscular Atrophy type 1 (SMA1) is a genetic disease that causes increasing muscle weakness and loss, happening because of damage to nerve cells. However, early treatment could have prevented this loss of muscle function in the legs.
On Thursday, Health and Social Care Secretary Wes shared on Instagram that he will be addressing concerns brought up by Jesy.
He praised Jesy Nelson and others who have spoken out, calling them inspiring. He also stated he would address the concerns she brought up about the screening process.
He responded after Jesy discussed her twins’ diagnosis on This Morning on Wednesday.
Jesy explained that doctors at Great Ormond Street Hospital have said her daughters likely won’t be able to walk or fully control their necks, meaning they will have disabilities. This is because the condition wasn’t diagnosed when they were born.
Jesy shared on This Morning that what bothered her most was realizing she’d noticed the early warning signs before she even understood what Spinal Muscular Atrophy (SMA) was.
Jesy and Zion were concerned when they noticed their twins had bowed legs and were breathing differently, but doctors and health visitors told them it was normal for premature babies to develop at their own pace and shouldn’t be compared to other children.
I might have been able to prevent them from losing their legs, and I doubt I’ll ever fully recover from that. All I can do now is focus on doing my best work and striving to improve things.
It was strange, but ever since I was in the NICU, the nurses always positioned me with my legs bent up, like a frog.
Jesy Nelson mentioned to her mother that she noticed the baby’s stomach looked different and seemed to be breathing from its belly, as she shared on the show ‘This Morning’ with hosts Ben Shephard and Cat Deeley.
She played a video of one of the girls’ breathing and explained that it was frustrating because if she were in that situation – if she had no control over it – she’d find it easier to cope. She essentially said accepting the unchangeable would be simpler.
It’s hard to accept knowing there’s a solution that could dramatically improve your child’s life and not being able to access it.
Bringing the babies home from the NICU, my main focus was simply making sure they were breathing and their temperature was okay. I wasn’t worried about things like whether their legs were moving at that point.
Jesy shared that her mother, Janice, was the first to notice she wasn’t well. It was unsettling, she said, because healthcare professionals had previously assured her she was healthy.
‘It took for my mum to say “they don’t move their legs the way they should be moving”.
My mum always worries, and at first I just figured she was being her usual self. But I started to notice their legs moving less and less, until they eventually stopped altogether.
That’s why early detection and treatment, starting at birth, are crucial.
She said it’s heartbreaking to see videos of the twins slowly losing the ability to use their legs during their first month.
‘That’s how quick it is and that is why it’s so important to get treatment from birth,’ she said.
Jesy later became upset and Cat comforted her. Jesy explained she was finding things difficult, and what really bothered her was wanting to be a mother figure, not just someone who provides care.
When Spinal Muscular Atrophy type 1 is treated shortly after birth, before symptoms appear, it can significantly reduce the disease’s impact, and many children experience few or no noticeable effects.
Jesy’s daughters have undergone treatment but their prognosis isn’t certain.
The singer has started a petition to have all newborns screened for Spinal Muscular Atrophy (SMA) and is committed to advocating for its approval.
Spinal muscular atrophy, or SMA, is a rare genetic disease that impacts the nerves controlling muscles. These nerves, called motor neurons, are located in the spinal cord and are essential for movement.
The condition happens because of a problem with the SMN1 gene, which usually makes a protein vital for the survival of motor neurons.
When the body doesn’t have enough of this protein, nerve cells slowly die. This prevents the brain from communicating with muscles, causing them to become weak and shrink over time.
This condition is passed down through families, and a child needs to receive a copy of the altered gene from both their mother and father to be affected.
Around one in 40 people carries the altered gene, often without knowing it.
The NHS reports that around 70 babies are born with Spinal Muscular Atrophy (SMA) each year in the UK. Without treatment, sadly, less than 1 in 10 of these children will live to be two years old.
SMA UK’s website highlights the importance of quickly identifying Spinal Muscular Atrophy (SMA) in babies, as early diagnosis leads to better health outcomes. They point out that the UK is significantly lagging behind other countries because it doesn’t include SMA in the standard newborn screening test. This test, done when babies are five days old, currently checks for nine other serious, but rare, conditions.
It can be tricky to spot the first signs of SMA-1, especially in babies born prematurely or those with other health issues, as any delays in development are often assumed to be related to their early birth or existing conditions.
Possible early indicators include less movement in the arms or legs, difficulty controlling the head or neck, problems with feeding or weak sucking, breathing that seems shallow or strained, frequent chest infections, and being slow to reach typical movement milestones.
Doctors emphasize that any signs of muscle weakness or difficulty with feeding in babies should be checked immediately, even if the baby wasn’t born early.
Experts emphasize that time is of the essence – getting diagnosed and starting treatment quickly gives people the best chance of a lasting recovery.
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2026-01-08 04:19