Jesy Nelson has always been open with her fans, but nothing could prepare her for the emotional journey she’s facing with her nine-month-old twins, Ocean Jade and Story Monroe.
Recently, the singer shared the heartbreaking news that her babies have been diagnosed with spinal muscular atrophy type one (SMA1) and may not live past the age of two.
Jesy hopes that by speaking out, she can raise awareness about this rare and serious condition.
Understanding SMA1
Spinal muscular atrophy is a genetic condition that progressively weakens muscles due to the loss of motor neurons in the spinal cord.
For babies like Ocean and Story, this means that without timely treatment, their muscles deteriorate, affecting essential functions like breathing and swallowing.
Type 1 SMA is the most severe form, often evident at birth, and sadly, many children do not survive past early childhood without intervention.
Jesy’s Courage and Hope
In a candid conversation with Jamie Laing on the Great Company podcast, Jesy described her determination to remain hopeful.
“My girls are the strongest, most resilient babies. I really believe they’re going to defy all the odds,” she said.
She explained how SMA affects her children’s muscles and the urgency of treatment, adding, “It’s not okay, but it is what it is.
I just have to accept it and try to make the best out of this situation.”
Early Warnings and Advocacy
Jesy has called on the NHS to expand standard newborn screening to include SMA, noting that simple tests costing around £1 could save children from severe outcomes.
Her twins were also affected by twin-to-twin transfusion syndrome (TTTS) in the womb and were born prematurely at just 31 weeks.
She shared the frightening reality of TTTS, which can threaten the survival of both twins if not treated.
The Journey of Motherhood
Becoming a mother changed Jesy in ways she never expected.
“I feel like I don’t really matter anymore; my whole heart and soul are with my babies,” she said.
She admitted that challenges she once worried about now feel trivial.
“Before, I’d cry in bed and feel sorry for myself, but now I don’t have a choice—I have to get on with it,” Jesy shared, highlighting the resilience she draws from her twins’ strength and joy.
The Difficult Pregnancy
Jesy didn’t initially plan on having children, so discovering she was pregnant with twins was a surprise.
She spent three months in the hospital due to TTTS and gave birth via C-section at 31 weeks.
Jesy was under general anesthesia for the delivery, which meant she missed the experience of holding her babies at birth—a moment she had eagerly anticipated.
Her first sight of them was through a plastic incubator, with masks and tubes covering their tiny bodies.
Early Challenges in the NICU
The twins stayed in the hospital for a month, and Jesy recalls the pain of being separated from them, even briefly.
She struggled to watch other nurses care for her babies and felt deeply that she couldn’t fulfill her role as their mother.
The experience was heartbreaking, compounded by advice not to compare her premature twins to other children their age.
Recognizing the Signs
As her twins grew, Jesy noticed unusual muscle weakness and positioning in their legs and bellies, prompting her to return to the hospital for tests.
Doctors initially observed poor muscle tone and suggested further scans.
Frustrated by delays in testing and rapidly declining muscle function, Jesy turned to private care and discovered the likely SMA diagnosis through a Zoom consultation.
“I just knew in my heart that they had SMA type one,” she said.
Fighting for Early Detection
Jesy is now campaigning for SMA to be included in routine newborn screening, believing early detection could dramatically improve outcomes.
Treated pre-symptomatically, SMA1 can often be prevented or managed, giving children the chance to grow with minimal or no symptoms.
Her advocacy highlights her determination to make a difference for other families facing similar challenges.
What Jesy Wants Others to Know
Through all the heartache, Jesy emphasizes the resilience of her twins.
Despite the medical hurdles, they continue to smile and bring joy every day.
“The things they’ve gone through, and they’re still happy and smiling—it gives me strength to keep going,” she said, sharing a bittersweet perspective on motherhood in the face of unimaginable challenges.
What Is Spinal Muscular Atrophy?
SMA is a disease that weakens muscles by affecting motor nerve cells in the spinal cord. Its severity varies by type:
- Type 1: The most severe; symptoms appear at birth, babies cannot sit, and without treatment, death usually occurs by age five.
- Type 2: Intermediate; sufferers cannot stand.
- Type 3: Mild; makes getting up from a seated position difficult.
- Type 4: Adult-onset; symptoms appear in the 20s or 30s.
