Demelza joins families and campaigners in welcoming SMA test news

The Department of Health has announced that newborn babies across England will be tested for the condition as part of the routine heel prick test from the end of this year.

SMA is a rare progressive genetic condition which causes muscles to weaken and waste over time, impacting mobility, breathing and swallowing and Demelza supports a number of children that have the condition.

SMA has been in the spotlight this year after former Little Mix star Jesy Nelson’s twin daughters were diagnosed at seven months and she has been calling for it to be added to the newborn screening tests.

Early detection of SMA is critical for better outcomes for babies, which is something Demelza's Deputy Director of Nursing, Dave Winch, says they see first-hand.

He said: “As nurses, we see the difference early intervention can make.

“The introduction of newborn screening for spinal muscular atrophy will allow babies to access life-changing treatments before irreversible symptoms develop.

“This will offer hope to families and significantly improve the prospects for children affected by the condition.”

Gemma Hall, from Tovil, is supported by Demelza as her six-year-old daughter Niamh has SMA1 and has welcomed the news.

She said: “It is a bittersweet moment and there have been some tears shed - it’s long overdue.

“It’s very poignant as six years ago, Niamh was being investigated and was diagnosed and I remember being asked if I had heard of SMA and I thought they were talking about formula milk.

“There definitely needs to be more awareness of the condition as I’m not a medical professional and I feel I’m always advocating for Niamh and explaining but at times I just want to enjoy being a mum and being with my cheeky six-year-old.

“Early detection doesn't just have emotional benefits but financial too - it is life-changing - so this news is very welcome and a step in the right direction.”