Parents of Children with Spinal Muscular Atrophy Extend Support to Jesy Nelson
Parents of two young children diagnosed with a severe muscle-wasting condition have sent a heartfelt message of solidarity to former Little Mix star Jesy Nelson, expressing empathy with the words: "We know how you feel."
Families Share Personal Journeys with SMA
Paola and Rhys Davie's two-year-old daughter Emma, along with Urszula and Daniel Kaniewfka's five-year-old son Bartosz, both have Spinal Muscular Atrophy (SMA), the same condition affecting Jesy Nelson's twin daughters, Ocean and Story. The families have connected with the singer while supporting a campaign urging for universal newborn screening for SMA across the United Kingdom.
This outreach comes shortly after Scotland became the first UK nation to implement routine screening for SMA as part of the NHS newborn blood spot test, highlighting a growing push for England and other regions to adopt similar measures.
Emotional Messages from Parents
Paola Davie, whose daughter Emma received her SMA diagnosis in 2024, shared her thoughts with Jesy Nelson, stating: "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 Kaniewfka, mother to 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."
Understanding Spinal Muscular Atrophy
Spinal Muscular Atrophy is a genetic disorder that leads to the degeneration of nerve cells in the brain and spinal cord, disrupting the brain's ability to send signals that control muscle movement. Common symptoms include:
- Floppy limbs and reduced muscle tone
- Delayed motor milestones such as sitting and standing
- Difficulties with breathing and swallowing
Emma, Bartosz, and Jesy's twins all have SMA type 1, which is the most severe form of the disease. Tragically, all four children were diagnosed later in infancy, which means they are likely to face lifelong mobility challenges. Early detection and intervention at birth could have virtually eradicated the condition, dramatically altering their life trajectories.
Advocacy for Newborn Screening
The recent announcement by the Scottish government to include SMA in newborn screening has sparked calls for England to follow suit urgently. Paola Davie, who is originally from Italy, noted: "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."
Rhys Davie emphasized the cost-effectiveness of the screening test, saying: "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 Kaniewfka, who had to travel to her native Poland to secure Bartosz's diagnosis, voiced strong support for the campaign: "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."
Breakthroughs in Gene Therapy
Both Emma and Bartosz have received pioneering gene therapy called Zolgensma through the NHS at London's Evelina Children's Hospital. This one-time intravenous treatment halts the progression of SMA and can eliminate the condition entirely if administered early enough. Jesy Nelson's twins, diagnosed in January 2026, have also undergone this gene therapy.
Although Emma and Bartosz may never achieve normal mobility, they have shown remarkable improvements since treatment. Urszula described Bartosz's progress: "Ten days after [gene therapy], Bartosz started crawling and rolling. 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 shared Emma's advancements: "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 Urgent Need for Screening Reform
The Mirror has been campaigning for two years to highlight that the NHS newborn heel prick test does not include screening for SMA, despite it being standard in most other developed nations. Pharmaceutical company Novartis estimates that 33 babies in the UK each year are left requiring wheelchairs due to late diagnoses.
The United Kingdom is currently a global outlier in newborn SMA screening, with 46 countries, including the United States and nearly three-quarters of European nations, already implementing such programs. The UK National Screening Committee initially decided against adding SMA to the newborn screening programme in 2018, citing a need for further research.
An NHS pilot program will screen children in select areas of England to compare outcomes, but a full rollout is not expected before 2031, leaving many families in limbo and advocating for faster action to prevent future cases of late-diagnosed SMA.
