Jesy Nelson’s twin daughters, Alex and Sam, are championing a vital cause. They are supporting their mother’s campaign for mandatory testing of spinal muscular atrophy (SMA) at birth. This condition is considered one of the most severe muscular diseases. Their advocacy aims to ensure that all newborns in the UK receive a blood test for SMA, which is currently part of an NHS test for ten other conditions conducted at five days old.
Advocating for Early SMA Testing
Jesy Nelson, a renowned singer, emphasizes the importance of early diagnosis for SMA. Alex and Sam believe that had they been tested at birth, they could have received necessary treatments sooner. This, they assert, could have minimized muscle deterioration associated with the disease.
Personal Experiences
- Sam noted the lack of a definitive cure for SMA but highlighted the transformative impact of early treatment.
- She stated, “Having the treatments that are available as early as possible can be life-changing.”
- Alex echoed this sentiment, underscoring the significance of timely access to medications to enhance quality of life.
The Importance of Early Diagnosis
Sarah, another advocate, shared her perspective on the urgent need for early diagnosis. She remarked, “It is important for children to be diagnosed as early as possible so they can start treatment straight away.” This insight reflects a broader concern among families affected by SMA.
Expressing her emotions, she stated, “I don’t want to be a nurse or a carer; I just want to be a mum.” She acknowledged the challenges that come with parenting a child with SMA but emphasizes a message of hope and perseverance. “Be patient and things will be okay,” she advised.
Through their collective efforts, Jesy Nelson and her daughters advocate for making SMA testing standard practice at birth, aiming to improve the lives of many children facing this challenging condition.
