What is spinal muscular atrophy (SMA) and who does it affect?

SMA is a rare genetic condition affecting muscle nerve cells, causing progressive muscle weakness. It can affect children and adults, including Jesy Nelson's twin daughters and Sian Kennedy's daughter Sienna.

Why are advocates pushing for newborn screening for SMA?

Including SMA in newborn screening, like the £5 heel prick test, could enable earlier treatment and prevent irreversible damage, significantly reducing long-term medical costs and improving patient outcomes.

What treatment is available for children with SMA?

Gene therapy drugs like Zolgensma are available for SMA. Early treatment is crucial as it can halt disease progression and help children gain motor functions, though ongoing supportive care may still be needed.

Home / Health / Mom faces trolls over daughter's rare disease

Mom faces trolls over daughter's rare disease

9 Jan

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Summary

Mother targets trolls for abusive online comments.
Daughter, 4, diagnosed with rare spinal muscular atrophy (SMA).
Advocates push for newborn screening for SMA.

A mother has spoken out against online trolls who targeted her and her four-year-old daughter, Sienna, who has spinal muscular atrophy (SMA). Sienna was diagnosed with the rare, progressive muscle-wasting disease at six months old and has since undergone gene therapy.

Kennedy expressed heartbreak after receiving "disgusting" comments online, which resurfaced painful emotions from her daughter's diagnosis. She advocates for SMA to be included in newborn screening tests, highlighting the potential cost savings and reduced suffering for families.

SMA UK is campaigning for the inclusion of SMA in the newborn blood spot test. An NHS spokesperson confirmed that the UK National Screening Committee is currently evaluating the introduction of routine SMA screening.

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