Paola and Rhys Davie’s little girl Emma, and Urszula and Daniel Kaniewfka’s son Bartosz, like Jesy’s twins, have Spinal Muscular Atrophy, which can cause muscle weakness
Jesy Nelson’s twins have Spinal Muscular Atrophy (Image: Jesy Nelson/Instagram)
The parents of two children with a devastating muscle wasting disease have sent a message of support to former Little Mix star Jesy Nelson, saying: “We know how you feel.”
Paola and Rhys Davie’s little girl Emma, and Urszula and Daniel Kaniewfka’s son Bartosz, like Jesy’s twins, have Spinal Muscular Atrophy (SMA). The couple’s reached out to the singer as they backed the Mirror’s campaign calling for all newborns to be tested for the condition – just days after Scotland became the first part of the UK to offer the vital screening.
Last night Paola, whose two-year-old Emma was diagnosed in 2024, told Jesy: “When you first get the news, it’s heart breaking. We have been there and know what you’re going through. Think one step at a time, and take one day at a time.”
Urszula, mum to five-year-old Bartosz, added: “I’m sorry you’re going through this. I remember how overwhelming it felt at the beginning. Your child is still your beautiful child, and there will be so much love and joy ahead.”
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Emma and Bartosz, like Jesy’s girls Ocean and Story, have SMA type 1 – the most severe form of the disease. It’s caused by a breakdown of nerve cells in the brain and spinal cord, which stop the brain sending messages that control muscle movement. Tell-tale signs often include floppy limbs, delayed motor milestones like sitting and standing and difficulty breathing or swallowing.
All four tots were diagnosed late, which means they will likely struggle with mobility issues for life. Devastatingly, if tests and treatment had been carried out at birth, SMA would have been virtually eradicated and their lives would look very different.
Last week the Scottish government announced all babies will be screened for SMA as part of the NHS newborn blood spot test. Calling for England to urgently follow suit, Paola, 33, said: “I’m Italian, and we realised soon after Emma’s diagnosis that in Italy they screen for SMA at birth.
“It’s awful to think that if I’d decided to give birth in Italy, we probably wouldn’t be having this conversation. Emma would probably be thriving without any limitations.”
Her partner Rhys, 37, added: “The test is extremely cheap, it’s so much benefit for so little investment. It’s a no brainer. The problem is the government doesn’t look at things until people are shouting at them to do something, so we hope that happens now.”
Urszula, 42, who was forced to travel to her native Poland to get Bartosz’s diagnosis, said: “I support the Mirror’s campaign 100 per cent – it would change the lives of children with SMA and their families.
“I have a friend with a child Bartosz’s age. They ordered a heel prick test by chance and it came back positive for SMA. He started treatment at four weeks old and is now running, jumping, playing football and experiencing everything that my child can’t. It’s just so difficult and upsetting.”
Emma and Bartosz received pioneering gene therapy Zolgensma though the NHS at London’s Evelina Children’s Hospital. The one-off procedure, administered through an IV, halts the progression of SMA, and can eradicate it completely if used early enough. Jesy’s girls were diagnosed in January this year. The star, 34, recently said they had undergone gene therapy.
Although Emma and Bartosz will likely never gain normal mobility, the youngsters have come on leaps and bounds since treatment. “Ten days after [gene therapy], Bartosz started crawling and rolling,” Urszula said.
“We couldn’t believe it – here was a child who two weeks earlier couldn’t move at all. It was amazing. He now crawls everywhere on his knees. He climbs the stairs, he slides down the stairs, he gets off the bed, he can go to the freezer and get an ice cream, and the other day he blew up a small balloon.”
Paola said: “Before treatment, Emma could only lie on her back and move her fingers and toes. Now, she can sit by herself, she can do some standing at her play kitchen, and has even taken a few steps. She is gaining some sort of independence and much more strength.”
Rhys added: “Any moment like that when we can see she’s become stronger is incredible – we just feel so much gratitude and joy. It brings tears to our eyes.”
The Mirror has been highlighting for two years how the NHS newborn heel prick test does not check for SMA despite it being added to screening tests in most other developed nations. Pharmaceutical firm Novartis estimates 33 UK babies every year are left needing a wheelchair because they are being diagnosed too late.
The UK is a global outlier in relation to newborn SMA screening, which is currently in place in 46 countries including the US and nearly three-quarters of Europe.
The UK National Screening Committee first decided not to add SMA to the newborn screening programme in 2018. It says more research is needed. An NHS pilot will screen children in some areas of England but not others so it can compare outcomes, but it means screening rollout is unlikely before 2031.
Disclaimer : This story is auto aggregated by a computer programme and has not been created or edited by DOWNTHENEWS. Publisher: mirror.co.uk
