Former Little Mix star Jesy Nelson has spoken publicly about the serious health condition affecting her twin daughters.
The singer revealed in an emotional video that they have been diagnosed with a rare and life-threatening genetic disorder.
Jesy welcomed Ocean Jade and Story Monroe Nelson-Foster last May with her partner, musician Zion Foster.
The twins were born prematurely, and doctors later identified signs that something was wrong with their development.
What is wrong with Jesy Nelson’s twins?
In the video shared on Sunday, the singer explained that the babies were not moving their legs as expected and were struggling to feed properly.
After months of medical appointments and tests, doctors confirmed the diagnosis.
“After the most gruelling three, four months, and endless appointments, the girls have now been diagnosed with a severe muscular disease called SMA type 1,” she said.
Spinal Muscular Atrophy (SMA) is a progressive condition that causes muscles to weaken over time. Nelson described its impact in stark terms:
“It does affect every muscle in the body, down to legs, arms, breathing, swallowing.”
What is SMA (Spinal Muscular Atrophy)
SMA is a genetic condition that leads to muscle wasting and, without treatment, can be fatal within two years.
In 2021, the Therapeutic Goods Administration (TGA) approved the breakthrough gene therapy drug Zolgensma for use in babies with SMA in Australia.
Zolgensma provides a healthy copy of the faulty SMN1 gene responsible for SMA, but early intervention remains critical because nerve damage cannot be reversed once it occurs.
In Australia, SMA affects approximately one in every 10,000 babies born and is the leading genetic cause of infant death if untreated.
According to the Department of Health, around one in 35 Australians carries the altered gene that can cause the disease without knowing it.
Currently, SMA screening in most of Australia is not yet part of the national routine newborn blood spot testing, although pilot programs and advocacy efforts are underway to expand early detection.
Early identification is vital because babies benefit most from treatment before symptoms begin.
What is the life expectancy for Jesy Nelson’s twins?
Specialists explained the long-term effects of the condition at Great Ormond Street Hospital in London, Jesy said.
It was there she was told that her daughters were probably “never going to be able to walk or regain their neck strength, and be disabled.”
She added that without urgent medical intervention, SMA type 1 is usually fatal in early childhood.
“Essentially, what it does is, over time, it kills the muscles to the body, and if it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
What is the treatment for SMA 1?
Jesy confirmed that her daughters have since received treatment and said she was deeply thankful for the medical care they were able to access.
“Because if they don’t have it, they will die.”
Since the diagnosis, the singer said she has had to take on a hands-on caregiving role at home.
She described the emotional toll of the experience, saying: “The reason I wanted to make this video was because the last three months have honestly been the most heartbreaking time of my life. I literally feel like my whole life has done a 360.”
What is Jesy’s hope for her twins?
Despite the challenges, the former Little Mix star said she remains hopeful and believes her daughters will exceed expectations.
She said she believed her daughters would “defy all the odds” and “fight this.”
She explained that she hoped to raise awareness and encourage faster diagnosis for other families facing the same condition.
How did Zion respond to the news?
After Jesy shared her story, Zion Foster reposted her video and shared a photo of the twins smiling.
“Still smiling through all the challenges. Daddy loves you so much.”
Jesy, now 34, previously revealed she experienced rare pregnancy complications before giving birth at 31 weeks. In an Instagram post last October, she reflected positively on her journey into motherhood.
She added that becoming a mother made her realise how “incredible” her body actually is.”
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