Jesy Nelson shared her true feelings after attending a Parliament debate on ‘life-changing’ screenings for spinal muscular atrophy (SMA).
The singer, 35, revealed in January her now one-year-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition.
Due to the late diagnosis, the girls are unlikely to be able to walk and require specialist equipment to help them breathe at night, as well as feeding tubes.
Jesy, who has been campaigning tirelessly on the issue attended parliament for a debate on whether a newborn screening for the disease should be rolled out across the whole of England.
The outcome of the debate was not what Jesy had hoped for while 72 per cent of the country will have access to newborn screening, the remaining 28 per cent will won’t.
Leaving parliament, Jesy fought back tears as she said: ‘I’m going to be completely honest, I was absolutely fuming. I feel so let down.
‘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 trial will involve seven of the 13 testing laboratories available to the NHS.
Last month, Jesy shared her joy after the NHS announced it would roll out ‘heel prick’ testing for SMA In newborn babies.
2026-06-25 12:46:00
