Mum supported by Demelza backs singer Jesy Nelson’s calls for healthcare change after twins’ diagnosis

The singer revealed at the weekend that her twin daughters have been diagnosed with the rare genetic condition at seven-months-old and she is now calling for the disease to be added to newborn screening tests.

Gemma Hall is supported by Demelza as her five-year-old daughter Niamh has SMA1 - a progressive genetic condition that causes muscles to weaken and waste over time, impacting mobility, breathing and swallowing.

Support charity SMA UK says early detection of the condition is critical for better outcomes for babies. Families of children who have the disease have long been campaigning for it to be included in the heel prick test, which newborns have at five days old and currently screens for 10 rare but serious conditions.

Gemma says it has been hard to see it so widely reported in the news as it brings it all back, and while it’s frustrating that ‘it takes a celebrity to raise awareness’ she’s pleased it’s back on the agenda and just hopes the change is made.

She said: “We have been fighting for newborn screening for a long time and it’s gut-wrenching we have been fobbed off. We have all had the battle of ‘what’s wrong with my baby’ and the screening would stop that.”

Gemma also wants to stress that hers isn’t a “sob story”, it’s just reality and that, after being diagnosed at five-months-old, Niamh is doing incredibly well.

“We were in and out of hospital after Niamh’s diagnosis but she had the gene therapy Zolgensma just before her second birthday and she’s doing amazingly,” she said. 

“She really is an absolute bundle of joy. She’s in mainstream school, she’s the funniest, cleverest little girl ever and she just doesn’t let her disability get in the way.”

Demelza also supports the calls for SMA1 to be added to the heel prick test.

Demelza's Deputy Director of Nursing, Dave Winch, said: "Diagnosing and treating SMA1 within the first few weeks of a child’s life, before the disease progresses and the muscles become weaker, will not only improve life expectancy, but it could also give a quality of life that every child deserves.

"It could mean less parents have to mourn the life they thought their child would have.

"As a local children’s hospice, we are grateful to Gemma, Jesy and all families who share their stories and raise awareness.

"We will continue to do all we can to support children and families with serious or life-limiting conditions."

Gemma says the support she has from Demelza has been life-saving. Niamh has recently been in hospital with a respiratory virus, which is the third time she’s been hospitalised with it, but her mum said each time she bounces back stronger and Demelza staff were there with them in ICU.

“Demelza helps in so many ways,” she said.

“I know I’ve got someone that can look after my daughter and I can do the simple things and it allows me to spend time with her half-sister Harper.

“Niamh goes for breaks at Demelza and she loves the hydropool and we always go there for their Christmas family events. Having Demelza’s support really is a game-changer.”