A powerful plea for change has been made by singer Jesy Nelson, who is determined to ensure that all newborns are tested for a rare muscle disease. This plea comes from a place of personal experience, as Nelson recently revealed that her twin daughters have been diagnosed with Spinal Muscular Atrophy (SMA).
A Mother's Fight for Her Daughters' Future
Jesy Nelson, the former Little Mix star, has opened up about her seven-month-old daughters' journey with SMA. In a heartfelt Instagram post, she shared the devastating news that her daughters, Ocean Jade and Story Monroe, may never walk due to the severity of their condition.
But here's where it gets controversial: Nelson is now campaigning to have SMA added to the routine NHS blood test conducted on newborns. Currently, this test screens for ten other conditions, but SMA is not included. Nelson believes that early detection could make a significant difference in the lives of babies affected by this disease.
"I'm starting a petition to get SMA on the newborn screening heel prick test from birth," Nelson stated. She emphasized her determination to make this happen, promising to fight for it to become part of the standard newborn screening protocol.
The pop star has also expressed her gratitude for the overwhelming support she has received since sharing her story. "Thank you for the outpouring of support and beautiful messages," she said, acknowledging the impact her campaign has had on raising awareness.
In a previous video, Nelson described the diagnosis process as grueling, involving numerous appointments. She explained that SMA affects every muscle in the body, impacting movement, breathing, and even swallowing. The disease progressively weakens the muscles, and if not treated promptly, it can be fatal for babies, with a life expectancy of only up to two years.
However, there is hope. In 2021, the NHS approved a groundbreaking gene therapy drug called Zolgensma to treat SMA in babies. This drug offers a healthy copy of the affected gene, but timing is crucial, as irreversible damage to the nervous system may already have occurred.
And this is the part most people miss: Scotland is already taking action, with plans to start routine SMA screening for babies from the spring. The National Screening Committee is also reviewing the possibility of introducing this across the UK.
Nelson's campaign aligns with SMA UK's efforts to advocate for routine screening for SMA on the NHS newborn blood spot test. This test currently screens for conditions like cystic fibrosis and sickle cell disease but excludes SMA.
As Nelson continues her fight, she encourages others to join her in this important cause. Will you stand with her to ensure that every baby has the chance for an early diagnosis and potentially life-saving treatment?
