News / charity
Children’s hospice calls for early diagnosis of spinal muscular atrophy
A children’s hospice at home charity has urged parents and health professionals to recognise the early warning signs of spinal muscular atrophy (SMA) and act quickly.
Jessie May Children’s Hospice has made the appeal following singer Jesy Nelson’s announcement that her twin daughters have been diagnosed with SMA Type 1.
The former Little Mix star has also called for universal newborn screening.
SMA is a rare genetic condition affecting around one in 10,000 babies in the UK.
Because routine newborn screening is not currently in place, many children are only diagnosed once irreversible nerve damage has occurred.
In contrast, screening programmes planned in Scotland from spring 2026 will allow babies to be identified before symptoms develop and begin life-changing treatment within days.
Wendy, a mum supported by Jessie May, said early concerns about her daughter Fenn were initially dismissed despite missed developmental milestones.
“We first approached our GP because Fenn wasn’t meeting her milestones, but our concerns weren’t taken seriously and she was put on waiting lists for over two months,” she said.
“By then, her condition had worsened significantly. Once she reached hospital, she received gene therapy and her life was saved, but early identification would have changed everything.”
Fenn’s early symptoms included difficulty lifting her head, struggling during tummy time and a loss of leg movement, followed by rapid weight loss and feeding difficulties.
“If your GP isn’t taking your concerns seriously, don’t wait – take your child to A&E,” Wendy added.
“Time is of the essence, and early treatment can make a real difference.”
Jessie May provides specialist nursing care in the home for children with SMA, including respiratory care, physiotherapy and feeding support.
“Time is of the essence, and early treatment can make a real difference,” said Wendy, Fenn’s mum
The charity says home-based care helps families manage complex medical needs, reduces hospital admissions and improves quality of life.
The charity hopes the renewed national focus, sparked by Nelson’s platform and the experiences of families like Fenn’s, will lead to faster diagnosis, greater awareness and more importantly, earlier access to life-changing treatments.
All photos: Jessie May
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