Jesy Nelson has opened up about a challenging period in her life through a heartfelt video on Instagram. She disclosed that her twin daughters have been diagnosed with a severe genetic condition known as SMA type 1.
The singer, known for her time with Little Mix, became a mother to twins Ocean Jade and Story Monroe Nelson-Foster in May 2025. Her path to motherhood has not been smooth. During her pregnancy, she faced a diagnosis of Twin-to-Twin Transfusion Syndrome (TTTS) and required surgery to address it.
TTTS is described as a rare disorder impacting identical twin pregnancies. It occurs when twins share a placenta, leading to uneven blood flow, which can result in early delivery, neurological and heart damage, or even be life-threatening.
Fortunately, both Ocean and Story were safely delivered, though prematurely, and spent about four weeks in a neonatal intensive care unit (NICU).
Recently, the family has encountered another health challenge with the diagnosis of type 1 spinal muscular atrophy (SMA) in the twins. This genetic condition leads to progressive muscle weakness, as explained by Cleveland Clinic.
Nelson shared in an emotional video on Instagram that her mother was the first to notice that the girls weren’t moving their legs much, prompting a series of medical appointments and tests. Ultimately, they received the diagnosis of SMA.
“After the most gruelling three to four months and endless appointments, the girls have been diagnosed with a severe disease called SMA type one,” Nelson explained.
She further elaborated: “It stands for Spinal Muscle Atrophy which affects every muscle in the body from legs, arms, swallowing.”
Nelson noted: “Over time, it kills the muscles in the body. If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
She highlighted the urgency of the situation, saying: “Once the girls got treated, it was a very rapid process. Time is of the essence with this disease.”
The assessment at Great Ormond Street Hospital revealed that the twins might never walk or regain neck strength, with a future of disability likely. However, Nelson remains hopeful: “The best thing we can do right now is to get them treatment and hope for the best.”
SMA has five different types, and the twins have been diagnosed with type 1. According to Cleveland Clinic, this type presents symptoms within the first six months, such as limited head control and decreased muscle tone.
The clinic adds: “Infants with type 1 SMA also have difficulty swallowing and breathing. Without breathing support, children with type 1 SMA die before their second birthday.”
Additional symptoms of type 1 SMA include:
The twins have since received their treatment, and Nelson mentioned that the hospital has become her ‘second home’. She described the past months as ‘the most heartbreaking time of my life’.
In closing her emotional video, Nelson expressed hope: “I truly believe that my girls will defy all the orders and with the right help they will fight this.”