Jesy Nelson has confirmed that her daughters’ devastating illness could mean the twins won’t make it to their third birthday.
The former Little Mix singer, 34, welcomed Ocean Jade and Story Monroe Nelson-Foster with partner Zion Foster prematurely in May last year.
After a difficult pregnancy and birth, she revealed that they’d ‘never walk’ after being diagnosed with spinal muscular atrophy (SMA).
Since the birth, Jesy and Zion, 26, have reportedly split, with an insider telling Metro ‘their priority will always be giving their daughters.’
While speaking to Jamie Laing on his Great Company podcast, the former X Factor star gave a heartbreaking update on her babies.
‘So spinal muscular atrophy is a muscular wasting disease, so they don’t have a gene that we all have in our body,’ she explained.
‘Their muscles are now deteriorating and wasting away, and if you don’t get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two.’
Jesy has been campaigning for SMA screening to be included in the heel prick test at birth, as the girls’ symptoms were not noticed until they reached six months.
Muscle weakness is a major indicator in diagnosing SMA, with symptoms like lack of leg movement checked for by GPs.
Unfortunately, for Jesy’s children, these early warning signs were missed, and it wasn’t until her mum suggested something was wrong that their diagnosis was given.
Now, the Black Magic singer is having to ‘just accept’ the reality of their condition and that she may only have a few years with her daughters.
She continued: ‘It’s not okay, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation… And my girls are the strongest, most resilient babies, and I really believe that they are going to defy all the odds.’
Symptoms of spinal muscular atrophy (SMA)
The symptoms of spinal muscular atrophy (SMA) affect everyone differently, but can include:
- Movement problems – such as difficulty sitting up, crawling or walking
- Problems with breathing or swallowing
- Twitching or shaking muscles (tremors)
- Bone and joint problems – such as an unusually curved spine (scoliosis)
- Muscle weakness – such as floppy or weak arms and legs
Jesy previously said she felt a ‘duty of care’ to raise awareness for this condition as it could ‘potentially save a child’s life’.
Doctors have told her that Ocean Jade and Story Monroe will never regain their neck strength and will likely never walk.
SMA has different types, which indicate the severity and, therefore, life expectancy of a patient.
Those with infantile SMA, like Jesy’s children, rarely survive past the age of two, although this has increased with modern treatments.
Type two, also called intermediate, is usually detected around six to 18 months, and while children can sit independently, they do require wheelchairs.
Patients with this type usually have a shortened life expectancy into their 30s, but this again is improving with medical interventions.
Types three and four do not impact life expectancy and are usually detected much later, even into adulthood, but complications can be fatal.
While pregnant, Jesy revealed that her daughters ‘could die’ as a result of twin-twin transfusion syndrome (TTTS).
The singer underwent a successful emergency procedure as a result and remained in the hospital to be monitored for the duration of her pregnancy before giving birth in May.
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