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Jesy Nelson Opens Up About Her 8-Month-Old Twin Daughters’ Rare Condition, SMA Type 1
Jesy Nelson is sharing details about her twin daughters’ rare medical conditions.
On Sunday, Jan. 4, the 34-year-old former member of Little Mix emotionally revealed in an Instagram video that her twin girls, Ocean Jade and Story Monroe, 8 months old, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare neuromuscular disorder.
Jesy Nelson and her fiancé, Zion Foster, became parents to twins on May 15, 2025. She was talking in the video about the moment a nurse warned her and her partner as they were leaving the Neonatal Intensive Care Unit that they should not expect their babies to be like other children since they were born premature at 31 weeks and “won’t reach the same milestones.”
Jesy Nelson Says Twin Daughters Have “Severe” SMA Type 1 and May Never Walk
Jesy Nelson told that very early it became apparent that her twin daughters had a serious problem going on besides just being premature.
She detailed how Ocean Jade and Story Monroe were not moving their legs as much as a typical baby would and they were also having difficulties with “feeding properly.”
“Following an incredibly challenging three, four months, and what seemed like an endless number of appointments, Jesy spread the word that the twins were diagnosed with a severely limiting disorder of the muscles called SMA type 1.”
Spinal Muscular Atrophy (SMA) is a hereditary neuromuscular disorder where the muscles get weak and waste away because certain nerve cells which control movement in the spinal cord are lost, according to the Cleveland Clinic. SMA Type 1 is the most common and the worst form, making up about 60% of the cases, and the symptoms usually appear within the first six months of life.
Jesy Nelson emotionally remembers the moment she was told what her girls’ diagnosis meant for their future when she was overwhelmed with tears.
“We were told that they were very unlikely ever to walk and that they probably would never regain their neck strength so that they would be disabled. So the most positive thing we can do at the moment is to get them treatment and then just hope for the best,” Jesy disclosed.
Jesy Nelson Shares That SMA Twins’ Condition Is “Most Severe” But Therapy Has Given Them A Chance
Jesy Nelson described Spinal Muscular Atrophy Type 1 (SMA) as “the most severe muscular disease that a baby can get,” and pointed out that if untreated, the life span of the affected child would most probably not exceed two years.
Jesy, the ex-Little Mix, confessed she is “extremely thankful” that her twin girls have already undergone the treatment and indicated that if it had not been for the treatment, “they would have died”. Besides that, since their disclosure, she has said that she “has become like a nurse” for Ocean and Story.
Jesy explained: “In the very short time that we got their diagnosis … I have to put them on breathing machines and do so many things that no mother really should do on their child.”
Jesy Nelson Says Twins’ SMA Diagnosis Has Been “Most Heartbreaking Time of My Life”
Jesy Nelson welcomed twin daughters into the world prematurely in May 2025 and after bringing them home from the hospital in June, she says the months after their Spinal Muscular Atrophy Type 1 diagnosis have been tremendously sad.
She spoke about the past 3 months as being “the most heartbreaking time of my life.” Jesy also confessed she feels like she is “grieving the life I thought I was going to have with my kids.”
Jesy Nelson is, however, trying to be positive and thankful. “I have to be grateful because ultimately, they are still here, and that’s the most important thing and they’ve already had the treatment,” she explained. “And I genuinely think my girls will be the miracle that does not get counted, and with the right help, they will battle this.”
Jesy Nelson stated that she shared her twins’ health situation for the benefit of other parents so that, if they find their child experiencing similar symptoms, they would understand the urgency of taking their child to a doctor and that early diagnosis and treatment of SMA can really save a baby’s life.
Her fiancé, Zion Foster, shared Jesy’s video on his Instagram Stories and then uploaded a picture of their twins. “Still smiling through all the challenges. Daddy loves you so much,” he captioned it.
