Weeping Jesy Nelson shares a heartbreaking new video of her twin daughters which shows the early symptoms experts missed as she admits ‘I could have saved their legs’:

by

Jesy Nelson recently posted a video showing her twin daughters’ first signs of Spinal Muscular Atrophy (SMA1), and shared her feelings that earlier diagnosis might have prevented them from losing the ability to use their legs.

Perrie Edwards, who used to be in the group Little Mix, was on the show This Morning on Wednesday. This came after she revealed on Sunday that her eight-month-old twins, Ocean Jade and Story Monroe, had been diagnosed with a medical condition.

SMA1 is a genetic disease that affects the muscles and nerves. It causes a gradual weakening and shrinking of the muscles because of damage to the nerve cells that control them.

Jesy explained that doctors at Great Ormond Street Hospital have advised her daughters were born with a condition that will likely mean they’ll never be able to walk or fully control their necks, resulting in lifelong disabilities.

Jesy shared on This Morning that what bothered her most was realizing she’d recognized the early warning signs before she even knew what Spinal Muscular Atrophy (SMA) was.

Jesy and Zion were concerned about their twins’ development, noticing bowed legs and unusual breathing. While health visitors and doctors acknowledged the babies were born prematurely and might reach milestones at a different pace, they advised against comparing them to other children.

I might have been able to prevent them from losing their legs, and I don’t think I’ll ever fully recover from that. All I can do now is focus on doing my best work and making things better in the future.

It was strange – ever since I was in the NICU, the nurses would position me with my legs bent up, like a frog’s.

Oh my gosh, I heard Jesy talking about them on This Morning, and it was SO cute! She told Ben and Cat that she actually said to her mum, ‘Look at the way their tummy moves when they breathe – it’s such a unique shape!’ I just melt thinking about it!

She played a video of one of the girls breathing, and then explained that it was frustrating because if she were in the same situation – feeling like she had no control over her circumstances – she would find it easier to cope if she simply accepted it.

It’s one thing to face a difficult situation, but when there’s a solution that could dramatically improve your child’s life, it’s something I simply can’t come to terms with ignoring.

When I first brought the babies home from the NICU, my biggest worry was simply making sure they were breathing and that their temperature was okay. I wasn’t focused on things like checking if their legs were moving.

Jesy said her mother, Janice, was the first to notice something wasn’t right. She admitted it was worrying because she’d been told by healthcare professionals that she seemed perfectly healthy.

‘It took for my mum to say “they don’t move their legs the way they should be moving”. 

My mum always worries, so I initially thought she was just being her usual self. But I started to notice their legs moving less and less, eventually stopping completely.

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 very upset and Cat comforted her. Jesy explained she was having a hard time, and what really bothered her was wanting to be a mother figure, not just someone who provides care like a nurse.

When Spinal Muscular Atrophy type 1 is treated shortly after birth, before symptoms appear, it can often be largely prevented, allowing many children to develop with few or no noticeable issues.

The singer has started a petition to have all newborns screened for Spinal Muscular Atrophy (SMA) and is committed to advocating for its approval.

Read More

2026-01-07 17:19