Jesy Nelson has shared an emotional milestone in her family’s journey after one of her twin daughters was able to sit upright in her wheelchair, offering a touching glimpse into life amid the family’s battle with Spinal Muscular Atrophy (SMA).
The singer, 35, revealed in January that her one-year-old twin daughters, Ocean and Story, had both been diagnosed with SMA Type 1, a rare muscle-wasting condition. Since then, she has become one of the leading voices campaigning for newborn SMA screening to be introduced across the NHS.
On Tuesday, Jesy took to Instagram to celebrate a moment that meant everything to her. She shared a photograph of one of her daughters sitting upright in her wheelchair without the medical tube usually attached to her face.
Alongside the image, Jesy wrote: “She looks like such a big girl with no tube on her face and sitting up right in her chair.”
For children diagnosed with SMA Type 1, sitting independently is typically not possible because the disease severely weakens the muscles responsible for movement. The achievement therefore marked a particularly emotional moment for the proud mum.
The update comes just weeks after Jesy admitted she was left “heartbroken and outraged” following a parliamentary debate over whether newborn SMA screening should be introduced across the whole of England.
The singer attended Parliament as MPs discussed plans for newborn screening, hoping the programme would become available nationwide. However, the outcome left many campaigners disappointed.
Under the current plans, newborn screening will initially be introduced in areas covering around 72 per cent of England from October, while the remaining 28 per cent will not yet have access as health officials continue evaluating the programme.
Speaking outside Parliament after the debate, an emotional Jesy said: “I’m going to be completely honest, I was absolutely fuming. I feel so let down.”
She continued: “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.”
“Based on where you live, how does that make sense? How is that fair? How is that fair?”
The debate had been triggered by a petition launched by Jesy, which attracted more than 150,000 signatures calling for universal newborn screening.
Health officials have defended the phased rollout, explaining that seven of the NHS’s 13 testing laboratories are currently equipped to carry out the screening, while the remaining laboratories require further preparation.
Speaking during the debate, Health Minister Sharon Hodgson said the other testing centres “do not currently have the requisite equipment” but added that more laboratories could join if circumstances changed.
Following the debate, Jesy addressed her followers in a heartfelt Instagram video, questioning why every baby in England would not receive the same opportunity for early diagnosis.
She said: “There is factual evidence that this treatment, if given from birth is completely life changing to a child that is diagnosed with SMA.”
“If it isn’t, and they get left untreated, there are facts that if your child doesn’t get treatment, they will not see their second birthday. They will die before the age of two.”
Jesy also challenged the government’s decision directly, asking: “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 recalled showing Sharon Hodgson a video comparing two sisters with the same SMA diagnosis, one treated from birth and the other diagnosed later.
According to Jesy, the minister responded: “Wow, is that what the treatment does? Wow.”
Fighting back tears, Jesy described the emotional toll of caring for two children living with SMA Type 1.
“I cannot tell you the outrage that I feel as a mother with two children who are suffering with SMA type one,” she said.
She added that her daughters’ lives “could have been walking by now,” explaining they rely on breathing machines, medication every four hours and constant care throughout the day and night.
Closing her emotional message, Jesy pleaded for urgent action, saying: “When are we going to get answers? And when is this going to change? Because this cannot go on.”
