Singer Jesy Nelson celebrated a milestone for one of her twin daughters, who is battling Spinal Muscular Atrophy (SMA) Type 1, as she shared a photo of the child sitting upright in her wheelchair.
Nelson, 35, revealed in January that her then-one-year-old twins, Ocean and Story, were diagnosed with SMA Type 1, a rare muscle-wasting condition. She has since been advocating for newborn testing to be implemented across the National Health Service (NHS).
Type 1 SMA prevents sufferers from sitting unaided. Nelson marked the occasion when one of her daughters achieved this milestone without medical tubing.
"She looks like such a big girl with no tube on her face and sitting up right in her chair," Nelson posted on Instagram.
Last month, Nelson shared her feelings of being "heartbroken and outraged" after attending a parliamentary debate on mandatory newborn screening for SMA. The result of the debate was that only 72% of the country will have access to newborn screening when it is introduced in October, leaving the remaining 28% without it.
Nelson expressed her disappointment after leaving Parliament, stating, "I'm going to be completely honest, I was absolutely fuming. I feel so let down. I have no more words. It's sad. It's so sad, like our children's lives could look so different, and to know that we are still debating it. We are debating whether SMA future children should be disabled or not. Based on where you live, how does that make sense? How is that fair?"
The parliamentary debate was initiated by a petition Nelson launched, which garnered over 150,000 signatures. The staggered rollout is proceeding under the guidance of the UK National Screening Committee, which aims to evaluate the screening's effectiveness and cost to the NHS. Areas that will not initially have access include Bristol, Cambridge, Leeds, Liverpool, Oxford, and Portsmouth.
Sharon Hodgson, Parliamentary Under-Secretary of State in the Department for Health and Social Care, stated that six of the 13 available NHS testing laboratories do not currently possess the necessary equipment. She indicated that more labs could be included if this changes.
Nelson directly addressed Hodgson, emphasizing that evidence shows early treatment from birth is life-changing for children with SMA. She noted that without treatment, many children do not reach their second birthday. Nelson recounted showing Hodgson a video of two sisters with SMA, one treated from birth and the other not. The treated child was running while the other, in a wheelchair, was being pulled by her sister. "When I showed her in this video, her exact words were, 'wow, is that what the treatment does? Wow.' She was gobsmacked," Nelson said.
"I cannot tell you the outrage that I feel as a mother with two children who are suffering with SMA type one, this awful disease. How heartbreaking it is to hear someone try and argue against why children with SMA, future children with SMA, should be denied of this," Nelson stated, fighting back tears. "You are basically telling me that if you live in a certain postcode, you're not as important as the other 72% of England. Your life doesn't matter as much. It's outrageous."
Nelson questioned the timeline for a full rollout and why some babies are at risk of missing out on treatment, which could prevent suffering and disability. She highlighted the daily physical and mental toll on families, including her own need to administer medication and reposition her children frequently due to their weakened muscles.
During the debate, Amanda Martin, MP for Portsmouth North, questioned why babies born in Portsmouth were being treated differently than those in other regions. Ruth Jones, MP for Newport West and Islwyn, pointed out that Ukraine had implemented newborn SMA screening during wartime, questioning the UK's delay.
Spinal Muscular Atrophy is a disease that affects motor neurons, leading to progressive muscle weakness. Type 1 SMA, the most severe form, is present at birth and typically results in death by age five if untreated. Other types vary in severity, with Type 2 involving an inability to stand and Type 3 causing difficulty rising from a seated position. Type 4 symptoms usually appear in adulthood.
