former Small mix Singer Jesy Nelson has said her twin children will “fight against all odds” after they were diagnosed with a rare genetic condition which means it is unlikely they will ever walk.
The 34-year-old singer and her fiancé Zion Foster welcomed twins Ocean Jade and Story Monroe Nelson-Foster in May after they were born prematurely. On emotional Instagram video In a statement released Sunday, Nelson said the girls were diagnosed with spinal muscular atrophy type 1 (SMA1).
“We were told they would probably never walk; they will probably never regain the strength of their neck, so they will become disabled, and so the best we can do right now is treat them and then just hope for the best,” she said.
“Thankfully the girls got treatment and you know I'm so grateful for that because if they don't get it they're going to die.”
Nelson said the twins were diagnosed after four “grueling” months of hospital visits and she wanted to raise awareness of the condition and signs to look out for as “time is of the essence” with the condition.
SMA1 is the most severe and common form of the genetic neuromuscular disease, causing muscle weakness, progressive loss of movement and paralysis.
“I just think I can bring as much attention to this issue and the signs as I can and then, you know, something good should come out of it,” Nelson said.
She added that signs to look out for include lethargy, an inability to hold up without support, froggy legs without much movement and rapid abdominal breathing.
She added: “If anyone is watching this video and thinks they are seeing these signs in their child, then please take your child to the doctor, to the hospital, because time is of the essence and your child will need treatment. And the sooner you get it, the better their life will be.”
According to the NHS, around 70 babies are born with SMA every year in the UK without treatment. less than one in 10 (8%) will live to be two years old.
Charity website SMA UK says that “early detection of the disease is critical” for better outcomes for babies, adding that the UK is “strikingly far behind” in not including SMA in the NHS newborn blood spot screening test, which is carried out when a baby is five days old and currently detects nine rare but serious conditions.
Three “transformative” new drugs for SMA have been introduced across the NHS since 2019, including disease-modifying treatments such as gene therapy. Last September, NHS Scotland added SMA to its newborn screening programme. under a two-year pilot scheme. Children treated before symptoms appeared were in many cases able to “follow the normal developmental pathway”, according to NHS Scotland.
Nelson said the diagnosis came after her mother noticed the twins were “not moving their legs as much as they should be” and later began having trouble feeding. But because the twins were born premature, the couple were told their development would likely lag behind that of other children, and when they first went to see their doctor they were told not to worry.
“The reason I wanted to make this video was because the last few months have honestly been the most heartbreaking time of my life,” the singer said.
“I literally feel like my whole life has turned 360 degrees, I almost feel like I'm grieving the life I thought I was going to have with my kids and I'm going to have to be grateful because at the end of the day they're still here and that's what matters and they've had treatment.
“And I truly believe that my girls will rise to the challenge and, with the right help, they will get through it and go on to do things that have never been done before.”
The singer has already used social media to talk about complications during 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 May 15.
