"I Could Have Saved Their Legs": Jesy Nelson Breaks Down in Heart-Wrenching Video as She Reveals Twin Daughters’ Rare Condition — and the Signs No One Saw"
In a raw, tear-filled plea that has gripped the nation, former Little Mix star Jesy Nelson has shared a devastating new video of her twin daughters, Luna and Lyra, revealing the early warning signs of a rare and life-altering condition that went tragically overlooked—even by medical professionals. In an emotional Instagram post watched by millions within hours, the 34-year-old singer wept as she admitted: “I could have saved their legs.”
The post, accompanied by intimate home footage of her two-year-old twins struggling to crawl and stand, has sparked urgent conversations about diagnostic delays, parental intuition, and a rare neuromuscular disorder that experts say is frequently misidentified in its earliest stages.
A Mother’s Agony
The video opens with Jesy cradling one of her daughters, gently massaging her legs. “Look at their feet,” she whispers through tears. “They were always turned in. Their knees knocked. They couldn’t push up like other babies.”
She then plays a clip from 14 months ago—Luna attempting to stand, only to collapse, her ankles rolling inward, her toes curling under. At the time, Jesy says, their GP dismissed it as “delayed motor skills” and “normal variation in twins.”
“But I knew,” Jesy says, voice breaking. “Deep down, I knew something was wrong. I kept being told, ‘Give it time.’ But time was the one thing I couldn’t give them back.”
It wasn’t until last November—after both girls failed to walk by 18 months and began showing signs of muscle atrophy—that a pediatric neurologist diagnosed them with Spinal Muscular Atrophy Type 3 (SMA Type 3), a progressive genetic disorder that destroys motor neurons, leading to muscle weakness, mobility loss, and, in severe untreated cases, paralysis.
The Missed Window
What makes Jesy’s pain so profound is the knowledge that treatment exists—but only if administered early.
A groundbreaking gene therapy called Zolgensma, approved in the UK since 2021, can halt or even reverse SMA progression—if given before symptoms become severe. The treatment costs over £1.8 million per child and is most effective in infants under 12 months.
“I pushed for genetic testing at 10 months,” Jesy reveals. “But the referral took six weeks. Then the test took another eight. By the time we got the diagnosis, it was too late for Zolgensma. The NHS said they didn’t meet the clinical criteria anymore.”
Instead, the twins now receive Evrysdi, an oral medication that slows progression—but cannot restore lost function. Both girls now wear custom leg braces and undergo daily physiotherapy. Doctors say they may never walk unaided.
“I look at them trying so hard,” Jesy sobs in the video, “and I think—if I’d been believed sooner, if someone had just listened… I could have saved their legs.”
Experts Respond: “Parental Instinct Is a Diagnostic Tool”
Jesy’s story has ignited a firestorm in the medical and parenting communities.
Dr. Amina Khalid, a consultant in pediatric neuromuscular disorders at Great Ormond Street Hospital, told the BBC: “Jesy’s account is tragically familiar. SMA Type 3 is often mistaken for developmental delay, especially in twins, who may naturally develop at slightly different paces. But key red flags—like persistent toe-walking, difficulty rising from the floor, or asymmetrical weakness—should trigger immediate genetic screening.”
She added: “Parental concern is not anecdotal. It’s clinical data. We must treat it as such.”
The NHS has since announced a review of referral pathways for rare neuromuscular conditions in response to public outcry.
A Campaign for Change
In the wake of her confession, Jesy has launched “Believe the Parent”, a new advocacy initiative in partnership with the charity Muscular Dystrophy UK. The campaign demands:
Faster access to genetic testing for infants showing motor delays
Mandatory SMA screening in all UK newborns (currently only piloted in a few regions)
Training for GPs to recognize “soft signs” of neuromuscular disease
“Luna and Lyra are my whole world,” Jesy says in a follow-up statement. “I can’t change their past, but I won’t let another mum feel this guilt. If my pain can save one child’s mobility, it’s worth it.”
An Outpouring of Support
Celebrities and parents alike have rallied around Jesy.
Pop star Dua Lipa posted: “Your strength is awe-inspiring. Sending so much love to your girls.”
Meanwhile, thousands of parents shared their own stories of misdiagnosis under the hashtag #BelieveTheParent.
Yet for Jesy, the grief remains raw. In her video’s final moments, she kisses her daughters’ feet—tiny, fragile, encased in orthotic braces—and whispers:
“I’m so sorry, my loves. Mummy’s fighting for you now.”
Spinal Muscular Atrophy affects 1 in 10,000 babies worldwide. Early diagnosis is critical. If you notice your child struggling to sit, crawl, or walk—trust your instinct and demand testing.
Comments
Post a Comment