Jesy Nelson has spoken candidly about the emotional and physical toll of her daily life since her twin daughters were diagnosed with Spinal Muscular Atrophy (SMA) Type 1, describing it as overwhelming, intense, and heartbreaking in ways she never imagined.
The former Jesy Nelson, now 34, shared that caring for her daughters Ocean Jade and Story Monroe often leaves her feeling torn between being a mother and being a caregiver responsible for painful but necessary medical procedures. She admitted that the hardest part of each day is having to carry out treatments that cause her babies distress, even though she knows they are vital for their survival and wellbeing.
Jesy explained that her daughters must undergo several medical interventions daily, and hearing them cry and scream during these moments is deeply upsetting. She said that while she understands the procedures are helping them, emotionally it feels as though she is hurting them herself. All she wants, she shared, is to simply be their mum, not the person who has to put them through discomfort.
She described her life as an emotional rollercoaster, with no two days feeling the same. Some days feel unbearably difficult, while others are lighter and offer brief moments of relief. Jesy said that although she never forgets her daughters’ diagnosis, there are times when the emotional weight feels less heavy, and she can breathe a little more easily. Other mothers, she noted, have told her that this unpredictability is part of the journey, and she is learning to take each day as it comes.
The twins were diagnosed with SMA Type 1 eight months after their birth, a rare and severe genetic condition that causes progressive muscle weakness. Jesy revealed that the diagnosis came as a devastating shock, especially after believing that the most difficult period was behind her once the girls came home from hospital. She said she had finally begun to feel she could enjoy motherhood, only for her world to be turned upside down again.
Jesy recalled the moment doctors confirmed the diagnosis as completely shattering. She felt as though everything she had already endured—the complicated pregnancy, the premature birth, and caring for her babies in neonatal care—had been only the beginning. At one point, she was told that her daughters’ chances of survival were extremely low, a thought that still brings her deep sadness when she reflects on it.
During her pregnancy, Jesy learned that her daughters were monochorionic diamniotic identical twins and had Twin-to-Twin Transfusion Syndrome, a rare condition in which twins share a placenta and blood supply unevenly. After their premature birth, she believed the worst was over, until her mother noticed that the girls’ legs were not moving as expected, prompting further investigations that eventually led to the SMA diagnosis.
Now, Jesy is campaigning for SMA testing to be included in the routine newborn blood spot test. She strongly believes that early diagnosis is crucial, explaining that a one-time infusion, if given early enough, can dramatically improve muscle development and long-term outcomes. She described it as worrying and heartbreaking that her daughters’ condition was not identified sooner.
Jesy shares her twins with her ex-partner Zion Foster, whom she became engaged to before the pressures of their daughters’ diagnosis placed a strain on their relationship. The couple eventually separated four months after getting engaged. Jesy now lives in Brentwood, Essex, with her mother and sister, who provide essential support as she raises her babies.
She addressed the misconception that she has professional help, explaining that it is just her and her mum caring for the twins day and night. Sleep is scarce, and exhaustion is constant, but she said they are navigating their new reality together. Jesy reflected that her years in Little Mix prepared her in some ways, particularly for coping with little sleep, but nothing could have truly prepared her for this.
Despite everything, Jesy expressed immense gratitude that her daughters are still alive and doing well after receiving their infusion treatment. She described Ocean and Story as incredibly strong and beautiful, surrounded by family who love them deeply. While she acknowledged that the journey ahead will never be steady or easy, she remains focused on gratitude, resilience, and taking each moment as it comes, holding on to the fact that the outcome could have been very different.
