Jesy Nelson’s tearful interview with former health secretary Wes Streeting over the rollout of “life-changing” spinal muscular atrophy screening is set to be shown in a new documentary.
The former Little Mix star, 35, will be the subject of a new Prime Video documentary Jesy Nelson: Life Changing, which is released on Friday.
The series follows her fight to change UK newborn screening laws after her twins, Ocean Jade and Story Monroe, were diagnosed with the rare condition SMA.
In the documentary, Nelson interviews Mr Streeting for ITV’s This Morning programme.
She asks him: “Why now? Why did it take for me to come along with a platform for people to take it seriously?”
Streeting said his inbox had been “full of people asking the same questions” but added many had been “so thankful” for Nelson’s advocacy work.
She 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.”
However, after the interview Nelson said she was “gutted” after feeling she missed bringing up all her points with Streeting and asked for “two more minutes” to speak to 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.”
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.”
Streeting then said he felt “pressure” to get the testing up and running so “every child benefits”.
In the documentary Nelson spoke about her 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.”
In the Prime Video documentary, Nelson also said it “infuriates” her that she might one day have to have a conversation with her daughters about how their diagnosis was missed at birth because of SMA not being 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?
“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 said.
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”.
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.
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 as part of the simple heel prick blood test shortly after birth.
