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Mom faces trolls over daughter's rare disease
9 Jan
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.
