Liputan6.com, Jakarta - Singer Jesy Nelson, best known as a former member of the group Little Mix, recently shared emotional news about the health of her twin daughters.
In an Instagram video posted on Sunday, January 4, 2026, Jesy revealed that Ocean Jade and Story Monroe, her twins, had been diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
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This rare and severe diagnosis carries serious implications, with Jesy stating that her children will likely never walk.
They are also expected to never regain neck strength and will face lifelong disabilities.
Medical Diagnosis: Spinal Muscular Atrophy (SMA) Type 1
Jesy Nelson's twins, Ocean Jade and Story Monroe, were diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and severe genetic condition.
SMA Type 1 is an inherited neuromuscular disorder that weakens and destroys muscles due to the loss of specific nerve cells in the spinal cord that control muscle movement.
The disease affects every muscle in the body, including the legs, arms, breathing, and swallowing, causing progressive muscle weakness, movement problems, and paralysis.
Symptoms of SMA Type 1 usually appear within the first six months of life, and without treatment, the life expectancy of babies with this condition often does not exceed two years of age.
However, improved standards of care and new therapies have helped extend the life expectancy and improve the quality of life for children with SMA.
SMA Type 1 is also known as Werdnig-Hoffmann disease.
A Long Pregnancy Journey and Diagnosis
Jesy Nelson and her fiancé, Zion Foster, welcomed their twins, Ocean Jade and Story Monroe Nelson-Foster, on May 15, 2025.
They were born prematurely at 31 weeks gestation.
Jesy Nelson's pregnancy was not without complications, including twin-to-twin transfusion syndrome (TTTS), which required surgery.
TTTS is a serious condition that affects 10 to 15% of identical twins who share a placenta.
The diagnosis of SMA Type 1 was made after Jesy Nelson's mother first noticed that the twins were not exhibiting the expected leg movements for their age.
Initially, doctors advised Jesy not to worry too much because the babies were born prematurely and might have slower development.
However, after months of grueling hospital appointments and the emergence of other signs, such as feeding difficulties, the diagnosis of SMA Type 1 was finally confirmed.
Personal Impact and a Call for Awareness
Jesy Nelson expressed her feelings of “grieving for the life I thought I would have with my children” after receiving the diagnosis.
She now serves as a full-time caregiver for her daughters and has had to do “things no mother should have to do.”
Despite the incredible hardships, Jesy is grateful that her children have received the necessary treatment, without which they would not have survived.
Jesy Nelson decided to publicize her diagnosis with a noble goal: to raise awareness about SMA and the importance of early diagnosis, as “time is of the essence” in treating this disease.