Jesy Nelson has spoken of her heartbreak and frustration after attending a parliamentary debate on newborn screening for Spinal Muscular Atrophy (SMA), insisting she will continue campaigning despite what she described as a deeply disappointing outcome.
The former Little Mix star, 35, has become one of the most prominent voices in the SMA community since revealing in January that her one-year-old twin daughters, Ocean and Story, had been diagnosed with SMA Type 1, a severe muscle-wasting condition.
On Monday, Jesy joined campaigners, families and MPs at Parliament as lawmakers debated whether newborn SMA screening should be introduced across all of England. However, the result fell short of what many campaigners had hoped for.
Under the current plans, newborn SMA screening will be introduced in October, but only 72 per cent of England will initially have access to the testing programme. The remaining 28 per cent will not be covered during the first phase of the rollout.
Speaking after the debate, an emotional Jesy struggled to hide her disappointment.
“I’m going to be completely honest, I was absolutely fuming. I feel so let down,” she said.
“I have no more words. It’s sad. It’s so sad, like our children’s lives could look so different, and to know that we are still debating it. We are debating whether SMA future children should be disabled or not.”
The debate was triggered by a petition launched by Jesy that attracted more than 150,000 signatures, highlighting growing public support for nationwide newborn screening.
The phased rollout follows recommendations from the UK National Screening Committee, which wants to assess the effectiveness of the programme and its impact on NHS resources before expanding it further.
Several major cities, including Bristol, Cambridge, Leeds, Liverpool, Oxford and Portsmouth, will initially miss out on the screening programme. The trial will operate through seven of the NHS’s 13 testing laboratories.
During the debate, Health Minister Sharon Hodgson explained that six laboratories currently do not have the equipment required to carry out the testing, although she noted that additional laboratories could be included if circumstances change.
Later, Jesy addressed her followers on Instagram, where she delivered an emotional response to the decision and questioned the reasoning behind the limited rollout.
“There is factual evidence that this treatment, if given from birth, is completely life-changing to a child that is diagnosed with SMA,” she said.
“If your child doesn’t get treatment, they will not see their second birthday. They will die before the age of two.”
Jesy also pointed out that several families attending the debate had already lost children to the disease.
She went on to challenge the Government’s position, asking why access to life-changing screening should depend on where a baby is born.
“If it’s safe enough for 72% of England to get this tested at birth, then why is it not good enough for the 28 per cent of England to not get tested at birth? How does that make any sense?” she asked.
The singer revealed that after the debate she personally spoke with Sharon Hodgson and asked whether she had ever met a child living with SMA. According to Jesy, the minister admitted she had not.
Jesy then showed her a video of two sisters with the same diagnosis, one of whom received treatment from birth while the other did not.
“They have the exact same diagnosis but one is in a wheelchair and the other is running around,” Jesy explained.
Fighting back tears, she described the emotional toll of caring for two children with SMA Type 1 and reflected on how different her daughters’ lives might have been with earlier intervention.
“They could have been walking by now. They didn’t have to be on breathing machines, they didn’t have to have coughing machines,” she said.
“I have to give them medicine every four hours, I have to turn them every two hours because they can’t do that themselves. I have to make sure they’re not choking.”
She added that families affected by SMA face the reality of the condition every day, while decisions about screening continue to be debated.
“I cannot tell you how heartbreaking it is to know that my children’s lives could have looked completely different.”
Despite her disappointment, Jesy vowed that the campaign is far from over and pledged to continue fighting until every newborn in England has equal access to screening.
“When are we going to get answers? And when is this going to change? Because this cannot go on.”
The debate also saw several MPs question the unequal rollout, with Amanda Martin asking why babies born in Portsmouth should have less access to screening than those born elsewhere, while Ruth Jones highlighted that Ukraine had managed to introduce newborn SMA screening despite the challenges of wartime conditions.
