Jesy Nelson's mum noticed 'something was wrong' with baby twins after health visitors said they look 'healthy'
Jesy Nelson has revealed that her mum is the one who sounded the alarm about her twin daughters - despite health visitors insisting they were doing 'great'.
During an emotional appearance on This Morning, the singer revealed that her mother, Janice White, spotted the signs of Spinal Muscular Atrophy (SMA) in the twins.
The singer, 34, sat down with hosts Cat Deeley and Ben Shephard on Wednesday (7 January) to discuss how her daughters, Ocean Jade and Story Monroe, are doing.
The little girls were born two months premature in May last year, while they had also living off one placenta in the womb throughout her pregnancy.
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Jesy was warned that this could cause 'lots of complications' for the tots, while doctors also said that the twins' early entry into the world could cause some developmental delays.
As the former Little Mix star and her partner, Zion Foster, were told to 'not compare' their children to other babies because of these factors, the pair initially weren't too concerned about Ocean and Story's lack of progress.
However, Jesy's mother, Janice, became worried after noticing that the baby's legs were becoming less mobile with each passing week.
Speaking on This Morning, the singer said: "A few months ago, my mum noticed that the girls were not showing as much movement in their legs as they should be.
"My mum is a worrier, and at the time, I thought she was just worrying. Then every day I started to see it – [their movement] started to become less and less and less.
"When I watch back at videos, they're moving their legs...but week two and three gets less and less until it just stops. And that’s how quick it is. That's why it’s so important to get tested from birth."
Jesy is now campaigning to get SMA added to the list of conditions that newborns are tested for at birth via the newborn blood spot (NBS) screening programme.
The NHS explains that this test 'enables early identification, referral and treatment of babies with 10 rare but serious conditions' - and Jesy has launched a petition which calls for the rare genetic condition to be added to the list.
Time is of the essence when it comes to SMA, as the sooner it is detected, the sooner treatment can begin. This can put a stop to the irreversible damage which the disease can cause.
The condition is both rare and often fatal, as it causes paralysis, muscle weakness and progressive loss of movement.
Jesy explained that Ocean and Story have each had a 'one off infusion', which 'essentially puts the gene back into their body that they don't have'.
"It stops the muscles [that are] still working from dying," she said of the treatment. "Any that have gone, you can’t regain them back." Now, it’s down to 'constant physio'.
"We’ve been told they’ll probably never walk or regain their neck strength. They’ll probably be in wheelchairs." Jesy said.
However, Jesy remains optimistic while looking to the future, as she added: "They’re still smiling and happy and have each other. All I can do is try my best to be there for them and give them positive energy."
Topics: Health, Celebrity, Celebrity News, Parenting, This Morning
Olivia Burke