Jesy Nelson wiped away tears as she confronted former health secretary Wes Streeting about why it took a pop star to force action on spinal muscular atrophy (SMA) screening for newborns. The exchange, filmed for her new Prime Video documentary *Jesy Nelson: Life Changing*, airs on Friday and lays bare the grief and fury of a mother whose twins were diagnosed with a condition she believes could have been picked up at birth.
“Why now? Why did it take for me to come along with a platform for people to take it seriously?” the 35-year-old former Little Mix star asked Streeting during an interview for ITV’s *This Morning*. Streeting replied that his inbox had been “full of people asking the same questions”, but added that many had been “so thankful” for her advocacy.
“Jesy Nelson tearfully asks Wes Streeting why SMA screening took a pop star to be taken seriously”
Nelson’s daughters, Ocean Jade and Story Monroe, were diagnosed with SMA – a rare, life-threatening muscle-wasting disease – after she noticed they had stopped kicking their legs. In the documentary, she showed videos of the girls moving freely at birth and then becoming immobile within two months. “If it was caught from birth … it’s literally a heel prick test, it is so life changing,” she said, her voice breaking. “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, Nelson admitted she was “gutted” and begged for “two more minutes” with Streeting to make her full case. “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,” she said, speaking through tears.
Streeting said the encounter had put him under “pressure” to get the testing up and running so “every child benefits”. But Nelson’s frustration runs deeper. “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.”
The documentary, which follows her campaign to change UK newborn screening laws, also shows Nelson grappling with a future conversation she may have to have with her daughters. She said it “infuriates” her that she might one day have to explain how their diagnosis was missed at birth because SMA testing was not included on the standard heel prick test. “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? … I can’t accept …”
