Former Little Mix star Jesy Nelson has shared a devastating update about her twin daughters' health, revealing they may not live to see their third birthday due to a rare genetic condition.
A Mother's Heartbreaking Reality
The 34-year-old singer, who welcomed daughters Ocean Jade and Story Monroe Nelson-Foster prematurely in May last year with partner Zion Foster, has confirmed that both babies have been diagnosed with spinal muscular atrophy (SMA). During an emotional appearance on Jamie Laing's Great Company podcast, Nelson explained the severity of their condition.
Understanding Spinal Muscular Atrophy
"Spinal muscular atrophy is a muscular wasting disease where they don't have a gene that we all have in our bodies," Nelson revealed. "Their muscles are now deteriorating and wasting away. If you don't get them treatment in time, eventually the muscles will all just die, which then affects breathing, swallowing, everything. They will die before the age of two."
The Black Magic singer explained that she's now having to "just accept" the reality of her daughters' condition, acknowledging that she may only have a few years with them. "It's not okay, but it is what it is," she said, adding, "My girls are the strongest, most resilient babies, and I really believe that they are going to defy all the odds."
Missed Early Warning Signs
Nelson has become a vocal campaigner for including SMA screening in the standard heel prick test given to newborns. Her daughters' symptoms weren't noticed until they reached six months old, despite muscle weakness being a major indicator of the condition.
"Doctors have told me that Ocean Jade and Story Monroe will never regain their neck strength and will likely never walk," Nelson shared. It was only when her mother suggested something might be wrong that the twins received their diagnosis.
The Different Types of SMA
Spinal muscular atrophy presents in several forms with varying severity:
- Type 1 (Infantile): Like Nelson's children, this rarely allows survival past age two, though modern treatments have improved outcomes
- Type 2 (Intermediate): Usually detected between six to eighteen months, children can sit independently but require wheelchairs
- Types 3 and 4: These don't typically impact life expectancy and may be detected much later, even in adulthood
A Difficult Journey to Motherhood
The twins' health challenges began even before birth. During pregnancy, Nelson revealed her daughters "could die" as a result of twin-twin transfusion syndrome (TTTS), requiring an emergency procedure. She remained hospitalised for monitoring throughout her pregnancy before giving birth in May.
Since the birth, Nelson and 26-year-old partner Zion Foster have reportedly separated, though sources indicate "their priority will always be giving their daughters."
Symptoms of Spinal Muscular Atrophy
The condition affects individuals differently but commonly includes:
- Movement difficulties including problems sitting up, crawling or walking
- Breathing or swallowing complications
- Muscle twitching or tremors
- Bone and joint issues like scoliosis
- General muscle weakness in arms and legs
Nelson previously expressed feeling a "duty of care" to raise awareness about SMA, believing it could "potentially save a child's life." Her campaign focuses on earlier detection through newborn screening, which might have identified her daughters' condition sooner.
The former X Factor contestant's journey has been marked by multiple health challenges, from the TTTS diagnosis during pregnancy to the SMA revelation months after birth. Despite the heartbreaking prognosis, Nelson remains determined to make the most of her time with her daughters while advocating for greater awareness and earlier detection of this devastating condition.
