Former Little Mix star Jesy Nelson has launched a heartfelt campaign to change UK health policy after her infant twin daughters received a life-altering diagnosis.
A Mother's Determination After Heartbreaking News
Jesy Nelson and her partner, Zion Foster, welcomed their twin girls, Ocean Jade and Story Monroe Nelson-Foster, prematurely in May 2025. The singer has now revealed that after an emotional few months, the eight-month-old babies have been diagnosed with Spinal Muscular Atrophy (SMA) Type One, also known as Werdnig-Hoffman disease.
This is the most common form of the rare muscular disease. Jesy shared the devastating prognosis that her daughters will never walk and will not regain neck strength, meaning they will be disabled. She emphasised that without the treatment they have now begun, the outcome would have been fatal, as life expectancy for severe cases is tragically short.
The Campaign for Change in Newborn Screening
Channeling her anguish into action, Nelson has started a petition to get SMA added to the UK's newborn blood spot (heel prick) screening. This test, offered around five days after birth, currently checks for nine rare conditions but does not include SMA.
"I just need you to know that I am so determined to make this happen," Jesy stated in an emotional Instagram update. "I am going to fight as much as I can to make this part of the newborn screening." She thanked fans for an "outpouring of support" for her family and others facing the same diagnosis.
Her advocacy has already reached the highest levels of government. Health Secretary Wes Streeting told ITV News he backs the singer's challenge, agreeing that she was "right to challenge and criticise how long it takes to get a diagnosis."
A Postcode Lottery in UK Screening
The issue highlights a growing disparity in healthcare across the UK. While Scotland has announced it will start screening newborns for SMA from spring 2026, the test is not yet routinely available in England, Wales, or Northern Ireland.
Jesy confirmed the issue is "under review" and promised to keep her followers updated on her campaign's progress. She also announced she will appear on This Morning to discuss her "baby girls" and the urgent need for screening reform.
Concluding her message, the singer wrote: "I love you all so much and I can't thank you enough for the support. We have a long way to go but I love you so much." Her fight promises to bring vital attention to a condition where early detection through screening can dramatically alter outcomes.
