The former Little Mix singer Jesy Nelson has said her twin babies will “fight all the odds” after being diagnosed with a rare genetic condition that means it is unlikely they will ever be able to walk.
The 34-year-old singer and her fiance, Zion Foster, welcomed their twins, Ocean Jade and Story Monroe Nelson-Foster, in May after they were born prematurely. In an emotional Instagram video posted on Sunday, Nelson revealed the girls had been diagnosed with spinal muscular atrophy type 1 (SMA1).
“We were told that they’re probably never going to be able to walk; they probably will never regain their neck strength, so they will be disabled, and so the best thing we can do right now is to get them treatment, and then just hope for the best,” she said.
“Thankfully, the girls have had their treatment, which you know, I’m so grateful for because if they don’t have it, they will die.”
Nelson said the twins had been diagnosed after four months of “gruelling” hospital appointments, and she wanted to raise awareness of the condition and the signs to look out for because “time is of the essence” with the disease.
SMA1 is the most severe and common form of the genetic neuromuscular disorder and causes muscle weakness, progressive loss of movement and paralysis.
“I just think that I can raise as much awareness about this as possible, and the signs, then, you know, something good has to come out of this,” said Nelson.
She added that the signs to look for were floppiness, an inability to hold themselves up without support, a “frog-like” positioning of the legs without much movement, and rapid breathing in the tummy.
She added: “If anyone is watching this video and they think they see these signs in their child, then please, please take your child to the doctor, to the hospital, because time is of the essence, and your child will need treatment. And the quicker you get this, the better their life will be.”
According to the NHS, about 70 children are born with SMA each year in the UK, and without treatment fewer than one in 10 (8%) will survive to the age of two.
The website of the charity SMA UK says that “early detection of the condition is critical” for better outcomes for babies, adding that the UK is “shockingly far behind” in not including SMA in the NHS newborn blood-spot screening test, which is offered when a baby is five days old and currently looks for nine rare but serious conditions.
Three “transformative” new SMA medicines were rolled out on the NHS from 2019, including disease-modifying treatments such as gene therapy. In September last year NHS Scotland added SMA to its newborn screening programme as part of a two-year pilot scheme. Babies treated before symptoms developed could, in many cases, “follow normal developmental pathways”, said NHS Scotland.
Nelson said the diagnosis was made after her mother noticed the twins “were not showing as much movement in their legs as they should be”, and they later began to struggle with feeding. But because the twins were premature the couple had been told their development was likely to be behind that of other babies and when they first went to see the doctor they were told not to worry.
“The reason I wanted to make this video was because the last few months has honestly been the most heartbreaking time of my life,” said the singer.
“I literally feel like my whole life has done a 360, I almost feel like I’m grieving a life that I thought I was going to have with my children, and I’ll have to be grateful because at the end of the day, they’re still here, and that’s the main thing, and they’ve had their treatment.
“And I truly believe that my girls will fight all the odds and, with the right help, they will fight this and go on to do things that have never been done.”
The singer has already used social media to speak about complications during her pregnancy, including twin-to-twin transfusion syndrome (TTTS), which affects 10% to 15% of identical twins who share a placenta and “can have serious consequences”, according to the NHS. The singer underwent an emergency procedure and spent 10 weeks in hospital before giving birth prematurely at 31 weeks on 15 May.
