Jesy Nelson makes Wes Streeting emotional during conversation on SMA diagnosis
By Lauren Del Fabbro, Press Association Entertainment Reporter
UK health secretary Wes Streeting appeared to fight back tears as singer Jesy Nelson spoke to him about the life-changing impact early detection of spinal muscular atrophy (SMA) could have had on her twins.
The 34-year-old singer revealed earlier this month that her daughters, Ocean Jade and Story Monroe Nelson-Foster, are unlikely to ever walk after being diagnosed with SMA1.
She has since started to campaign for SMA1 screenings to happen from birth and started a petition to get the condition added to the newborn blood spot screening test, also known as the heel prick test.
In an emotional conversation with Mr Streeting on ITV’s This Morning, Nelson said: “It’s just madness to me that we are living in a day and age now where we have got three treatments that are life changing, and it’s still not part of the heel prick test.
“There’s going to be so many more babies that are going to be diagnosed with this and so many families that are going to have to experience what I’m going through right now when it doesn’t need to be happening.”
Mr Streeting responded: “That’s the pressure I feel, because it could have been so different. If you’ve got an earlier diagnosis.”
He praised her for speaking out about her family’s experience, adding that people are “so grateful” to her for using her platform, and said he was working to speed things up to ensure more babies get screened early.
The health secretary added: “In terms of screening, there is a live evaluation going on now that will give us, I hope, the evidence base to bring forward what you’re calling for and that evaluation, which will involve around two-thirds of babies, isn’t due to report until January 2028 so we’re talking two years from now.
“Firstly, can we make sure the evaluation involves all babies during the trial period, and secondly, can we bring it forward? That’s what they’re working on.”
According to the NHS website, the test is offered to every baby at five days old and involves taking a blood sample to find out if it has one of nine rare but serious health conditions.
Nelson previously said her twins had already had treatment, a one-off infusion that puts a missing gene back into their body to stop other muscles from dying.
It does not help regain any muscles that have already died, which means her twins are unlikely to ever walk.
She said she showed Mr Streeting a video of two sisters who have SMA1 – one in a wheelchair while the other was able to run beside her – highlighting how life changing early detection and treatment can be.
Mr Streeting told Nelson: “I found that really hard to watch because the outcomes for those two kids were so different.
“I’ll be honest, I didn’t know until your experience and your campaign and the way you’ve spoken so powerfully and emotionally about your own experience, I wasn’t aware of the way in which the testing had come along leaps and bounds.”
The singer appeared emotional and said: “I feel so passionately about trying to raise awareness about this and getting this change because I believe that no parent should ever have to go through this.”
She later added: “I’m just hoping and praying now that he will put his money where his mouth is, and he is going to try and push the process quicker and make change.”
Scotland has announced it will start screening babies for SMA from the spring, but the test is not currently available for newborns elsewhere in the UK.
Nelson gave birth to the twins, who she shares with fiance Zion Foster, prematurely in May after a number of complications throughout her pregnancy.
She rose to fame after winning The X Factor in 2011 with Little Mix alongside Leigh-Anne Pinnock, Perrie Edwards and Jade Thirlwall, but she left the band in December 2020.
She released two songs as a solo artist: Boyz, which featured US rapper Nicki Minaj, in 2021 and Bad Thing in 2023.