Jesy Nelson broke down in tears while asking former health secretary Wes Streeting to implement a “life-changing” spinal muscular atrophy (SMA) screening for newborns. The former Little Mix star, 35, has been followed by cameras for the new Prime Video documentary Jesy Nelson: Life Changing, released on Friday.
Campaign for Newborn Screening
The series follows Nelson’s fight to change UK newborn screening laws after her twins, Ocean Jade and Story Monroe, were diagnosed with SMA, a rare genetic condition that causes muscle weakness and movement problems. In the documentary, Nelson meets with Streeting and interviews him for ITV’s This Morning programme.
She asked him: “Why now? Why did it take for me to come along with a platform for people to take it seriously?” Streeting replied that his inbox had been “full of people asking the same questions” but added many had been “so thankful” for Nelson’s advocacy work.
Emotional Plea
Nelson told him: “It’s just madness that we are living in a day and age where we have three treatments that are life-changing and it’s still not part of the heel prick test.” After the interview, she said she was “gutted” for missing some points and asked for “two more minutes” to speak with him.
“If I showed you videos of my girls from when they were first born where they kicked their legs to then in the space of two months they stopped … if it was caught from birth … it’s literally a heel prick test, it is so life changing,” she said. Speaking through tears, Nelson added: “I feel so passionately about trying to raise awareness for this and getting it changed. I believe no parent should ever have to go through this. If we can prevent this it’s life changing to people’s families and their children.”
Government Response
Streeting said he felt “pressure” to get the testing up and running so “every child benefits”. The Department of Health announced on Thursday that the national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of this year. Hundreds of thousands of babies will be screened via the simple heel prick blood test shortly after birth.
Personal Impact
In the documentary, Nelson expressed frustration that her daughters’ diagnosis could have been picked up months earlier. “It will never make sense to me that there are people in this world that have a decision over whether my baby will be disabled or not. Where is the justice in that?” she said. “That is why I have thrown myself into this, because I refuse to let anyone go through this again.”
She also said it “infuriates” her that she might one day have to explain to her daughters how their diagnosis was missed at birth because SMA was not included in the heel prick test in the UK at the time. “What will they ask me when they are older? Will they be mad I didn’t see the signs sooner and could have potentially given them a completely different life?” she said.
“It shouldn’t have been their life. I know disabilities don’t define children, but I can’t accept they should have been able to walk and run and live how a child should live,” she added. However, at the end of the film, she said SMA would “never stop me enjoying my life with my girls” and that caring for them and her campaign helped her feel like she now “had purpose”.
About SMA
According to the NHS, SMA causes muscle weakness, movement problems, issues with breathing and swallowing, muscle tremors, and bone and joint problems. Since the twins’ diagnosis, Nelson has been campaigning for the condition to be added to the newborn blood spot screening test, as early treatment can help avoid some of its most devastating effects.
