What is Spinal Muscular Atrophy Type 1, and how does it affect Jesy Nelson's twins?

Spinal Muscular Atrophy (SMA) Type 1 is a severe genetic neuromuscular condition that affects motor function, potentially preventing children like Jesy Nelson's twins from ever walking. It can also cause breathing and swallowing difficulties.

What is Jesy Nelson campaigning for regarding SMA?

Jesy Nelson is campaigning for mandatory newborn screening for SMA Type 1 to be included in the heel prick test, emphasizing the critical need for early detection and treatment.

What are the types of Spinal Muscular Atrophy?

There are four primary types of Spinal Muscular Atrophy: Type 1 (most severe, affecting infants), Type 2 (children who can sit but not walk), Type 3 (older children who lose ability to walk after age three), and Type 4 (developing in adulthood).

Home / Health / Singer's Twins Diagnosed with Rare Genetic Disorder

Singer's Twins Diagnosed with Rare Genetic Disorder

24 Mar

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Summary

Singer Jesy Nelson's twin daughters diagnosed with SMA Type 1.
SMA Type 1 can prevent children from ever walking.
Nelson campaigns for mandatory newborn SMA screening.

Singer's Twins Diagnosed with Rare Genetic Disorder

Singer Jesy Nelson revealed that her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1. This rare genetic condition affects motor function and could prevent the twins from ever walking. Nelson shared the emotional journey of diagnosis, which involved months of appointments.

Following the diagnosis, Nelson has actively campaigned for SMA Type 1 to be included in newborn blood spot screening tests. She emphasized the critical importance of early detection and treatment, noting that three life-changing therapies are available in the UK. Without treatment, the prognosis for SMA Type 1 is extremely grim.

SMA UK CEO Giles Lomax explained SMA as a genetic neuromuscular condition affecting around one in 14,000 births. He detailed four types, with Type 1 being the most severe, often presenting in infants with breathing difficulties and floppiness. Early detection through a blood test is crucial for successful treatment, which can enable children to develop normally.

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